The Cure Starts Now News https://thecurestartsnow.org/news/ Get the latest news about The Cure Starts Now and DIPG research progress Promising Pathway Act (PPA) Family Stories <p>The Promising Pathway Act (PPA), introduced by Senators Mike Braun, Kirsten Gillibrand, Lisa Murkowski, Kevin Cramer and Roger Wicker in June of 2023 is a revolutionary bill changing how current FDA guidelines are applied with terminal and rare diseases like DIPG, DMG and Medulloblastoma. It’s key provisions not only provide a method to allow promising therapies to move faster for the patient with a conditional approval process, but also affirms that any provisional approval is backed with a third-party registry available to industry, researchers, and patients. You can learn more by <a href="/media/eo1jhsna/senate-ppa-bill-version-6-20-23.pdf" title="Senate PPA Bill Version 6 20 23">reading the act</a>, <a href="/media/snej0fmw/promising-pathway-act-necessity.pdf" title="Promising Pathway Act Necessity">reviewing those organizations that support it</a>, and getting involved at <a href="/ppa">https://thecurestartsnow.org/ppa</a>.</p>
<p>Below are some stories of families and patients personally impacted by these challenges and how PPA might have helped their fight against cancer.</p>
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<h3 class="text-center">Grace Ekis</h3>
<h5 class="text-center" style="padding-bottom: 25px; font-weight: bold;">North Huntingdon, PA</h5>
<p style="float: left; margin-bottom: 5px;"><img alt="Grace Ekis" src="/media/vp3cajga/grace_ekis.jpg" style="padding-right: 28px; width: 400px;"></p>
<p>In early 2007, our then 4-year-old daughter, Grace Elizabeth Ekis, was diagnosed with DIPG, one of the rarest and most devastating childhood cancers. Although we were grateful to live in proximity and have access to Children's Hospital of Pittsburgh, both my husband and I were shattered to find out that she was given a mere 9-13 months to live. Despite being treated at one of the best children's hospitals in the country, her prognosis was without a treatment plan that could ensure her survival.  At the time, the normal course of treatment was one round of radiation to simply extend her life for a few months. There were slim offerings of experimental drugs, and we were told that none of them were specifically targeted to her rare brain cancer.  When we questioned why this was the case, we were told that there were simply not enough children affected with this cancer to make it worthwhile for either drug companies or our government to support its research. Left with insurmountable feelings of inadequacy as parents to help our daughter, and no other option, we chose the standard treatment and began to make memories with Grace. On February 14, 2008, 13 months after diagnosis, we were forced to say goodbye to our daughter.  Our unfathomable grief and despair have left us with a commitment to begin a journey through the Reflections Of Grace Foundation.</p>
<p><strong>Why the Promising Pathway Act is Important to our Family: </strong> The Promising Pathways Act is important to us because it allows children diagnosed with the rarest and most virulent brain cancers options that our daughter was not afforded.  It ensures that appropriate drug options and therapies would be available within their lifetime, <em>without relying on petitioning for compassionate use</em>.  We believe that this Act benefits children and adults with rare diseases by gaining meaningful access to drugs and therapies as they race against time.</p>
<p><strong>-Tamara Ekis, </strong><em>mother of Grace</em></p>
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<h3 class="text-center">Elena Desserich</h3>
<h5 class="text-center" style="padding-bottom: 25px; font-weight: bold;">Cincinnati, OH</h5>
<p style="float: left; margin-bottom: 5px;"><img alt="Elena Desserich" src="/media/j2fd2vqs/elenaplayhouse-crop.jpg" style="padding-right: 28px; width: 400px;"></p>
<p>The fight for the “homerun cure” and DIPG research, in many ways, started to gain momentum with Elena. Diagnosed in 2006 at the age of 6 with Diffuse Intrinsic Pontine Glioma, her public battle and determination from her parents formed the basis of The Cure Starts Now Foundation, 135 trials and $30 million invested in both research and support. Learning that many experts felt the future of cancer research might come from DIPG research, but that it was generally considered a “lost cause”; her parents wrote what they considered to be a private blog questioning how we prioritize cancer funding in April of 2007. The last words of this journal were the words “the cure starts now” and with it started the cause that today is the largest funder of not only DIPG and DMG research but also the only “homerun cancer research” organization in the world. <br><br>Elena’s lessons during her battle were more private. In the 9 months after her diagnosis, she quietly left behind notes of love and support for her family for them to find after her passing. Her heart picture, “I Love You” came to symbolize not only her love for her family but today is the logo for the charity. During her battle she lost the ability to speak and ultimately turned to her notes to express her feelings. She died in August of 2007. After her passing, her parents shared the notes they found, urged by friends to combine this with their blog in a book to tell the world the importance of this cause. Several years later, they did, ultimately becoming a New York Time bestselling book translated into 22 languages worldwide.</p>
<p><strong>Why the Promising Pathway Act is Important to our Family: </strong> Elena’s story isn’t about the cancer. It is about the resilience of these children and our need to do more. During her fight we were told that we should “go home and make memories” because there were no options available to us and no trials that were open to her type of cancer. The Promising Pathway Act, had it been in effect earlier, might have helped with this – thus allowing pharmaceutical companies to see promise in those cancers that the experts believe might just offer us clues to cure all cancers through those that we can learn the most from. Instead of excluding our children from trials, this will allow our society to prioritize those “rare” pediatric cancers that have no current path beyond the lab – and allow families to never again be told to “make memories” rather than to have the power to fight the cancer.</p>
<p><strong>-Brooke Desserich, </strong><em>mother of Elena</em></p>
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<h3 class="text-center">Ashton Hawkins</h3>
<h5 class="text-center" style="padding-bottom: 25px; font-weight: bold;">Morrow, OH</h5>
<p style="float: left; margin-bottom: 5px;"><img alt="Ashton Hawkins" src="/media/ja1lo1f3/ashton_hawkins.jpg" style="padding-right: 28px; width: 400px;"></p>
<p>Ashton is our sweet and beautiful 7-year old daughter (our second born) who was diagnosed with medulloblastoma brain cancer at the end of August. Since her diagnosis, Ashton has undergone two brain surgeries and began radiation this week on October 16th. She will continue radiation for a consecutive six-weeks, followed by Ovarian Tissue Preservation, and nine rounds of chemotherapy, which is expected to take at a minimum, one-year. Today, Ashton is suffering from Posterior Fossa Syndrome, brain damage from her two surgeries, and is unable to walk without significant help, a walker, or her wheel chair. Her cognitive abilities, emotions, and reactions have all been affected and we don’t have any answers to when or if she will ever return to the girl she was before cancer. The road ahead for us is going to be unimaginable. We don’t know if she will ever be healed from cancer, live a normal life, be able to have children, or if it will or won’t come back again. No kid deserves to be diagnosed with cancer. No kids deserves the pain. No kid deserves this battle.</p>
<p><strong>Why the Promising Pathway Act is Important to our Family: </strong> Most people don’t think about their child dying. But, when your kid has cancer, it crosses your mind every day. There is far too little funding and research being allocated towards childhood cancers, specifically brain cancer. While the frontline doctors, nurses, oncologists, neurosurgeons and other staff dedicate their lives to beating and eradicating cancer, congress and those who are supposed to represent the American people do not. Congress should be putting more effort and support towards protecting our kids from cancer. This would include not only funding, but the attention, and advocacy that is so desperately needed. With the childhood cancer diagnosis's increasing on a yearly basis, there needs to be decision makers and leaders who are fighting the fight with us. This bill is crucial. No parent wants to lose their child, ever. No parent ever wants their child to suffer the last years, months, weeks, or days before their child dies in a hospital like kids with cancer do. But, this happens every day in the lives of families dealing with cancer. This would be a step in the right path to helping gain interest, funding, and the resources that childhood cancer deserves.</p>
<p><strong>-Amanda Hawkins, </strong><em>mother of Ashton</em></p>
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<h3 class="text-center">Connor George</h3>
<h5 class="text-center" style="padding-bottom: 25px; font-weight: bold;">Jamestown, ND</h5>
<p style="float: left; margin-bottom: 5px;"><img alt="Connor George" src="/media/ynblytqs/connor_george.jpg" style="padding-right: 28px; width: 400px;"></p>
<p>Connor was diagnosed with Medulloblastoma in October 2020 when he was 2 years old. Three months after finishing treatment he relapsed and he underwent treatment once again.</p>
<p><strong>Why the Promising Pathway Act is Important to our Family: </strong> Scans today are currently clear but we know that can change at any moment, which is why the PPA is so important to us. If Connor relapses again, we are basically out of treatment options. Currently, promising trials have to be tested on adults first, for a series of phases. Only at a certain point can it be offered to children. We don’t have that type of time. We need promising options to be offered immediately or more quickly to our children as time is limited. Our children are our future, we need to do whatever is possible and as quickly as possible to save them. The PPA gives us the chance to attempt trials that otherwise would not be an option.</p>
<p><strong>-Brooke George, </strong><em>mother of Connor</em></p>
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<h3 class="text-center">Cameron Sarubin</h3>
<h5 class="text-center" style="padding-bottom: 25px; font-weight: bold;">Macungie, PA</h5>
<p style="float: left; margin-bottom: 5px;"><img alt="Cameron Sarubin" src="/media/lx2f1i12/cameron_sarubin.jpg" style="padding-right: 28px; width: 400px;"></p>
<p>Cameron is an energetic, sweet, train-loving boy who adores his little brother, Evan and his Mommy and Daddy — and his whole extended family! Right before Easter of 2023 for four days, Cameron complained of dizziness, was sporadically vomiting and walking with his head tilted. After various MRIs, it was discovered that Cam had a 2.5 cm brain tumor in this 4th ventricle. The doctors at CHOP were able to successfully remove the entire tumor, which was diagnosed as an Anaplastic Ependymoma (PFA) and he started 33 sessions of radiation therapy four weeks after surgery. He has done amazing with recovery and handling the treatments. He hasn’t needed any PT or OT which is a miracle in itself. He even walked himself out of the PICU to the car upon discharge, and learned to ride a bike only two hours after a sedated radiation treatment! We fought a hard battle of infertility to bring Cameron into this world and we will be fighting even harder to keep him here, happy, and healthy!</p>
<p><strong>Why the Promising Pathway Act is Important to our Family: </strong> Every single day parents are hearing the words “your child has cancer,” it’s a hopeless, isolating, and earth-shattering thing to hear. We would go to the ends of the earth to save our children, and make sure they are getting every opportunity to live a long, healthy life--the Promising Pathway Act could do just that. With removing the barriers that are taking too much time, which these children do not have, it gives children the hope and opportunity to not leave any stone unturned to healing them. The PPA can speed up the time for revolutionary breakthroughs and finally find the cure that we have been searching for centuries. Please help us save our children and give them the hope to live a long and healthy life that they so desperately deserve.</p>
<p><strong>-Cara Sarubin, </strong><em>mother of Cameron</em></p>
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<h3 class="text-center">Lauren Hill</h3>
<h5 class="text-center" style="padding-bottom: 25px; font-weight: bold;">Lawrenceburg, IN</h5>
<p style="float: left; margin-bottom: 5px;"><img alt="Lauren Hill" src="/media/lbcae3hj/hill-collage.png" style="padding-right: 28px; width: 400px;"></p>
<p>Lauren was diagnosed on November 20, 2013, and life as I knew it and imagined it would be, was forever changed that afternoon. Lauren was diagnosed with an inoperable terminal pediatric form of brain cancer located in the pons called DIPG. She battled for 16 1/2 months before her brain hemorrhaged and it took her life. She was beautiful, smart, funny and gave the best hug. She was a scholar, an Honor Society Student with a love of sports, mostly basketball and soccer. She was a beacon of love and hope to her family, friends and other DIPG families. In 2014 the NCAA allowed her college basketball team in Ohio at Mount Saint Joseph University in Cincinnati, Ohio to be moved up in order for her to be able to live out her dream to play to play a collegiate level basketball game before her body gave out on her due to tumor progression and further complications from the tumor.</p>
<p>Her story caught a national platform and was covered by ESPN and a multitude of other media outlets. She believed her life’s purpose was to serve as an ambassador for the DIPG community and to let everyone know the current treatments and research was absolutely unacceptable. As an intelligent young adult, she asked so many hard questions that as a parent and medical staff should not have had to answer. She had to know all the details, all the faults in the research system and understood the odds. Yet she gave every interview asked by news outlets and even went live on The View in 2015 to tell the story only DIPG Families knew. She was holding good on awareness and being a voice for all the little kids that had to go through and feel what she was feeling in her body. Lauren received numerous Courage awards from Indiana, Ohio, Kentucky, Pat Summitt personally delivered her courage award. President Obama even wrote her a note. Postmortem she won a 2015 ESPY, was entered into the Indiana Basketball Hall of Fame as well as the NCAA Women’s Basketball Hall of Fame in Tennessee and countless other awards. Her awards now displayed at our local high school to remind students to Never Give Up on your dreams and to keep fighting for what you believe in.</p>
<p>She spoke not for herself, but for all the small kids that did not have the words or understanding of the severity of the situation. She raised $1.4 million in research funds in just 6 months before she passed.</p>
<p>If we had better treatments and medication that would have allowed her to live, who knows what platform she would be using now to make a difference in pediatric cancer. She may have even been working with all today, to give kids and families a chance at more life.</p>
<p><strong>Why the Promising Pathway Act is Important to our Family: </strong> Imagine for a moment your child has DIPG or another terminal cancer with the odds of 99% that your child will pass away before 2 years and a median life span 9-12 months. You will watch them swell up on steroids, mentally and physically change as they lose body functions and their independence all unknown the hand you will be further delt, depending on what the tumor decided to turn off as it grows with nothing to stop it. These kids are knowing and trapped in their deteriorating bodies. As a parent we help fix things, our job to keep them alive and thriving to their fullest potential.</p>
<p>You will feel Hopeless, Helpless and that you are failing your child. There were hardly any new drugs to try. You would be desperate for anything with a chance. I was desperate…… Lauren was desperate to try anything new. She wanted to go down fighting and she wanted to win more life that DIPG was being robbing of.</p>
<p>In the weeks before her death at Cincinnati Childrens Hospital Medical Center. Nurses would come into the room and ask us multiple times a day if we needed anything else. One night, I dared to answer what was on my heart every time they asked. The only thing that I NEEDED or wanted was for anyone to go to the research building and use whatever they had on Lauren. I NEEDED to try anything and everything to save my child. I would have stollen it myself if I knew what I was doing.</p>
<p>I write this with tears in my eyes, feeling like I failed my daughter. WE FAIL OUR CHILDREN and that includes the government and the red tape that prevents families from having a chance. Why do they have to wait to get drugs that could possibly prolong or even save their life? Why do they have to wait for a chance to live just because they are smaller humans? This is totally unacceptable for our future productive citizens of our great nation. I don’t want another family to feel the lifetime sentence of grief and pain of watching their child suffer, die, and bury them. You will never be the same again.</p>
<p>Promising Pathways Act absolutely needs to move forward, together we could make it possible to try the latest and greatest drugs and not the ones from years past that have proven to do nothing. Parents need choices! The end game is the same. At least we can go down fighting to our fullest potential. Please strongly consider helping these families that are in a desperate medical situation. In my ESPY speech, I pleaded for people to help change the outcome now. Do not sit on the sidelines and do nothing. You never know, one day, when it will touch someone, you love, and you wished you had opportunities of current and better treatments. To see video of Lauren herself visit: <a href="https://LaurensFightForCure.org/About" target="_blank" rel="noopener">LaurensFightForCure.org/About</a></p>
<p><strong>-Lisa Hill-Fenstermaker, </strong><em>mother of Lauren</em></p>
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<p>To learn more about PPA and to get involved, please visit <a href="/ppa">https://thecurestartsnow.org/ppa</a></p> https://thecurestartsnow.org/news/promising-pathway-act-ppa-family-stories/ Tue, 24 Oct 2023 14:56:46 -0500 https://thecurestartsnow.org/13329 Graeter's Ice Cream Sets Record Year, Raising $290,000 to Help Find the Homerun Cure™ for Pediatric Brain Cancer <p><em>Graeter’s and The Cure Starts Now continue to pave the way for sufficient cancer research funding</em></p>
<p><strong>Cincinnati, OH (September 28, 2023)</strong> — Cincinnati-based Graeter’s Ice Cream completed its annual Cones for the Cure campaign – an 11-day event that offers guests a unique way to support The Cure Starts Now and pediatric brain cancer research. This record-breaking year, Graeter’s will donate <strong>$290,000</strong> as a result of guest support, company donations and ice cream sales of the seasonal favorite, Elena’s Blueberry Pie ice cream.</p>
<p>All 55 Graeter’s retail stores participated in this year’s fundraising effort, with many stores setting new individual records. The Cure Starts Now’s Co-Founder and Chairman of the Board, Keith Desserich shares, “Graeter’s has been an incredible partner for The Cure Starts Now for the last 15 years. We are so pleased with the results of this year’s campaign and are proud to have Graeter’s as part of The Cure Starts Now family. Their dedication to the cause has significantly helped us continue the fight for the Homerun Cure® for cancer.” </p>
<p>In addition to Cones for the Cure, Graeter’s also donates a portion of the proceeds from every pint of their seasonal ice cream flavor, Elena’s Blueberry Pie to The Cure Starts Now. The campaign continues to surpass donation goals year after year, demonstrating the community’s love for Elena’s Blueberry Pie ice cream.</p>
<p>“Ice cream is a family-centric business, and it’s our privilege to help families through the good times and the bad,” shares Chip Graeter, 4<sup>th</sup> generation Graeter’s family member. "The Cones for the Cure annual event allows us to have a positive impact in the community and with the families we serve. This year’s donation not only surpassed previous years, but has led to a total of <strong>more than </strong><strong>$1.9 million in donations</strong> from the Cones for the Cure event over the past decade. This has always been a great showing of families supporting families.”</p>
<p><u>About Graeter’s</u></p>
<p><em>Graeter’s Ice Cream, celebrating its 153rd anniversary, produces craft ice cream using French Pots®, a small batch, artisanal method of production dating back over a century. Graeter’s has won the hearts of ice cream enthusiasts across the country as well as the respect of the nation’s most influential foodies. Tasted among 13 national brands, Graeter’s was voted the #1 Vanilla Ice Cream by MyRecipes.com in 2019. Famous for their signature chocolate chips, the Cincinnati-based company remains family owned and operated and continues to handcraft ice cream 2½ gallons at a time. Today, Graeter’s currently has 55 retail stores and ships over 300,000 pints annually for online mail order sales. Graeter’s can also be found in more than 3,000 grocery stores in 46 states. Visit </em><a href="http://www.graeters.com"><em>www.graeters.com</em></a><em> for more information.</em></p>
<p><a href="https://www.facebook.com/Graeters"><em>https://www.facebook.com/Graeters</em></a><br><a href="https://twitter.com/Graeters"><em>https://twitter.com/Graeters</em></a><br><a href="https://instagram.com/graeters/"><em>https://instagram.com/Graeters</em></a><br><a href="https://www.pinterest.com/Graeters/"><em>https://www.pinterest.com/Graeters</em></a></p>
<p><em><u>About The Cure Starts Now</u></em></p>
<p><em>The </em><em>Cure Starts Now was started in honor of 6-year-old Cincinnati girl, Elena Desserich, and her battle with DIPG. With over 44 chapters worldwide, The Cure Starts Now has quickly gained acclaim as one of the fastest growing cancer research charities and one of the first ones to advocate a homerun strategy for cancer research. Many experts believe that the lessons we learn from fighting pediatric brain cancer may in fact provide us the critical first step in winning the battle against all forms of cancer, both pediatric and adult. Since 2007, The Cure Starts Now has <strong>funded over $30 million</strong> in DIPG/Homerun Cure™ cancer research and support with their collaborative partners in over 17 countries worldwide.</em></p>
<p><a href="https://www.facebook.com/TheCureStartsNow/"><em>https://www.facebook.com/TheCureStartsNow/</em></a><br><a href="https://twitter.com/CureStartsNow"><em>https://twitter.com/CureStartsNow</em></a><br><em><a href="https://www.instagram.com/CureStartsNow/">https://www.instagram.com/CureStartsNow/</a><a href="https://www.instagram.com/curestartsnow/"></a></em></p>
<p><em><img alt="" src="/media/23edpokk/cones-2023_pressreleasecollage.jpg"></em></p> https://thecurestartsnow.org/news/graeters-ice-cream-sets-record-year-raising-290-000-to-help-find-the-homerun-cure-for-pediatric-brain-cancer/ Tue, 03 Oct 2023 10:37:08 -0500 https://thecurestartsnow.org/13222 Connor’s “CURE”sade Against Cancer <p>Connor George is a spunky little boy who sees magic in every part of his life. He looks at the world with absolute joy and an open heart. Much of Connor’s young life was spent in the hospital when he was diagnosed with <a href="https://www.medulloblastoma.org/medullo-facts/what-is-medulloblastoma/" title="What is Medulloblastoma?">medulloblastoma</a>. After his diagnosis, his mother Brooke began researching for information, education, and organizations that specialized in pediatric brain cancer leading her to discover The Cure Starts Now. After months of research, Brooke determined The Cure Starts Now’s mission was the revolutionary pathway to funding pediatric brain cancer research.</p>
<blockquote>“I loved the fact that The Cure Starts Now is made up of families affected by pediatric brain cancer and are all fighting together for our children.” – Brooke George</blockquote>
<p>Medulloblastoma is a fast-growing primary central nervous system tumor. It usually appears as a solid mass in the cerebellum. It can spread to other areas of the brain and spinal cord through cerebrospinal fluid. Medulloblastoma is the most common malignant brain tumor in children, with 75% of cases occurring in children under the age of ten. The aggressive pediatric brain cancer also has subgroups that can be resistant to treatment, therefore meeting the criteria for Homerun applications. “While medulloblastoma has a better prognosis than <a href="https://www.dipg.org/facts/what-is-dipg/" title="What is DIPG">DIPG/DMG</a>, survival does not come without challenges,” Brooke stated. Thanks to recent research, DIPG and medulloblastoma have greater similarities than previously believed.</p>
<figure style="float: left !important; clear: both; margin-left: 0px; padding-bottom: 15px; padding-right: 5px;"><img alt="Connor and Brooke George" src="/media/2n5f441a/connor-brooke-george.jpg" style="width: 350px !important;" /></figure>
<p>Connor received his diagnosis when he was two years old. Within one month, he underwent seven surgeries before he was able to begin his required treatment. Once cleared, he began an eight-month journey with chemotherapy. Connor relapsed three short months after completing treatment, requiring additional surgeries and six weeks of proton radiation. Despite spending most of his childhood in the hospital, Connor never complained.</p>
<p>Separation from his siblings during treatment took a toll on Connor, though they tried to visit when able. On a trip to the zoo with his mom, Connor picked out stuffed animals for himself and his siblings who were back home, out of state. Brooke said she would buy a toy just for him. He quickly returned the toy to the shelf and replied, “I don’t want to get anything if no one else does.” Connor’s big heart and capacity for kindness continue to teach his family the value of time and the power of love.</p>
<blockquote>“Some people shy away from the cancer world after treatment finishes but I threw myself in. I wanted to turn my pain into purpose.” – Brooke George</blockquote>
<p>Brooke’s priorities began to change after Connor’s first completed treatment. A passion began to take hold of her heart to advocate for childhood cancer awareness. She reached out to The Cure Starts Now and asked to start the first North Dakota Chapter, Connor’s “CURE”saders.</p>
<blockquote>“Pediatric brain cancer is a monster. A relentless, abusive, life-destroying bully. And if we can stop cancer in its tracks by first defeating the biggest enemy, that being pediatric brain cancer, then who wouldn’t want to support that?” – Brooke George</blockquote>
<figure style="float: right !important; clear: both; margin-left: 0px; padding-bottom: 15px; padding-left: 10px;"><img alt="George Family" src="/media/fdzfove2/george-family.jpg" style="width: 350px !important;" /></figure>
<p>Now, at age 5, Connor has no evidence of disease status. With every new experience, Connor consistently views the world as a magical place. He is finally able to experience school, summers, and events that he loves. His family celebrates all of the big and small wins every day. The George family also remains humble. Quick to cry and quicker to worry, the family lives in a state of constant fear of the unknown. Anxiety builds every four months as they prepare for his scans, and they hope the cancer remains at bay. They are committed to advocating for childhood brain cancer and funding essential research until the cure is discovered. Only now, they have a support system of hundreds of The Cure Starts Now families to help them in their journey.</p>
<p><strong>To donate go to <a href="https://donate2csn.org/nd-connors-curesaders">donate2csn.org/nd-connors-curesaders</a></strong></p> https://thecurestartsnow.org/news/connor-s-cure-sade-against-cancer/ Thu, 28 Sep 2023 04:24:06 -0500 https://thecurestartsnow.org/13131 17th Annual Cones For The Cure Campaign Launches with a Larger Than Ever Fundraising Goal <p><em>The Cure Starts Now and Graeter’s Ice Cream Partnership strives to find a “Homerun Cure™” for Childhood Cancer</em></p>
<p><strong>CINCINNATI, OH </strong><strong>(September 1, 2023)</strong> – <a href="http://www.graeters.com">Graeter’s Ice Cream</a>, a 153-year-old, family owned craft ice cream company, has again partnered with <a href="/" title="thecurestartsnow.org">The Cure Starts Now</a> in its 17th annual campaign in support of finding the Homerun Cure™ for childhood cancer. The campaign gives ice cream lovers a unique way to support this increasingly important cause and brings hope to those in need while indulging in the seasonal Elena's Blueberry Pie ice cream flavor. Graeter’s goal is to raise over $250,000 this year, shooting to make 2023 the biggest year yet! Since teaming up in 2009, Graeter’s has raised more than $1.675 million through the Cones for the Cure event.</p>
<p>During the <em>Cones for the Cure</em> Campaign, running from September 7<sup>th</sup> through September 17<sup>th</sup>, Graeter’s Sweet Rewards members on the Graeter’s App will be eligible for a free single dip sugar cone of Elena’s Blueberry Pie ice cream. When redeeming that free cone in any Graeter’s scoop shop, rewards members will be able to make a donation directly to The Cure Starts Now. Joining Graeter’s Sweet Rewards on the Graeter’s app is free. Those who wish to donate can also do so at <a href="https://www.conesforthecure.org/">conesforthecure.org</a>.</p>
<blockquote>“Our main goal every year is to help raise awareness for The Cure Starts Now with our Cones for the Cure effort and our signature Elena’s Blueberry Pie ice cream,” shared Chip Graeter, 4<sup>th</sup> generation co-owner of Graeter’s. “We’ve been committed to this cause ever since we first partnered with The Cure Starts Now back in 2009. We have a lofty goal this year and we hope everyone will stop by a scoop shop to learn about The Cure Starts Now Foundation, enjoy some delicious ice cream, and support these children and families.”</blockquote>
<figure style="float: left !important; clear: both; margin-left: 0px; padding-bottom: 15px; padding-right: 5px;"><img alt="" src="/media/lveb4b2j/heart-collage.png" style="width: 350px !important;" /></figure>
<p>“Working with Graeter’s Ice Cream and their entire staff is truly a blessing, and we’re honored this family brand continues to support The Cure Starts Now and our strategic efforts. We love that they honor specific ambassadors during the event and make a difference for all those families going through this battle,” shared Keith Desserich, Co-Founder and Chairman of the Board at The Cure Starts Now.</p>
<p>Each store will also feature Information about this year's Cones for the Cure Ambassadors, children who are either currently battling or very recently battled pediatric brain cancers like DIPG/DMG and Medulloblastoma. Customers can learn about their stories and know that supporting this campaign directly supports research that will make a difference to them and other children fighting cancers.</p>
<p><u>About Graeter’s</u></p>
<p><em>Graeter’s Ice Cream, celebrating its 153rd anniversary, produces craft ice cream using French Pots®, a small batch, artisanal method of production dating back over a century. Graeter’s has won the hearts of ice cream enthusiasts across the country as well as the respect of the nation’s most influential foodies. Tasted among 13 national brands, Graeter’s was voted the #1 Vanilla Ice Cream by MyRecipes.com in 2019. Famous for their signature chocolate chips, the Cincinnati-based company remains family owned and operated and continues to handcraft ice cream 2½ gallons at a time. Today, Graeter’s currently has 55 retail stores and ships over 300,000 pints annually for online mail order sales. Graeter’s can also be found in more than 3,000 grocery stores in 46 states. Visit </em><a href="http://www.graeters.com"><em>www.graeters.com</em></a><em> for more information.</em></p>
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<p><a href="https://www.facebook.com/Graeters"><em>https://www.facebook.com/Graeters</em></a></p>
<p><a href="https://twitter.com/Graeters"><em>https://twitter.com/Graeters</em></a></p>
<p><a href="https://instagram.com/graeters/"><em>https://instagram.com/Graeters</em></a></p>
<p><a href="https://www.pinterest.com/Graeters/"><em>https://www.pinterest.com/Graeters</em></a></p>
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<p><u>About The Cure Starts Now</u></p>
<p><em>The Cure Starts Now was started in honor of 6-year-old Cincinnati girl, Elena Desserich, and her battle with DIPG. With over 44 chapters worldwide, The Cure Starts Now has gained acclaim as one of the fastest growing cancer research charities and one of the first ones to advocate a homerun strategy for cancer research. Many experts believe that the lessons we learn from fighting pediatric brain cancer may in fact provide us the critical first step in winning the battle against all forms of cancer, both pediatric and adult. Since 2007, The Cure Starts Now has funded </em>over <em>$30 million in DIPG/Homerun Cure cancer research and support at institutions globally.</em></p>
<p></p>
<p><em><u>https://www.facebook.com/TheCureStartsNow/</u></em></p>
<p><em><u>https://conesforthecure.org/</u></em></p>
<p><a href="https://twitter.com/CureStartsNow"><em>https://twitter.com/CureStartsNow</em></a></p>
<p><a href="https://www.instagram.com/curestartsnow/"><em>https://www.instagram.com/CureStartsNow/</em></a></p>
<p></p> https://thecurestartsnow.org/news/17th-annual-cones-for-the-cure-campaign-launches-with-a-larger-than-ever-fundraising-goal/ Tue, 29 Aug 2023 12:12:07 -0500 https://thecurestartsnow.org/13036 Brooke the Brave: A Girl on Fire for Fundraising <p>A child’s cancer diagnosis can be lonely and isolating at the beginning of the journey. Children and families are thrust into a new world and must navigate that unfamiliar world with a lot of uncertainty. When Brooke Ross was diagnosed with a brain tumor called Ependymoma in March 2022, she and her family never expected the outpouring of love and support they received. Brooke has been handling her diagnosis with a level of maturity and bravery rarely seen in a 9-year-old. She has also been dominating fundraisers all year with support from unlikely places.</p>
<p><strong>Tiny Humans Doing Huge Things<br /></strong>This spring, Brooke’s friends rallied around her to host a bake sale fundraiser in her honor. It took a month for the children to gather and plan their bake sale at school, all while talking to Brooke and assuring her that they wanted to host this event in her honor and with her.<br /><br /></p>
<blockquote>"Brooke has had so much excitement when she talks to me about all they're planning. We have seen so many friends and classmates demonstrate such care, sympathy, empathy, compassion, and maturity in how they support Brooke since her diagnosis! We are all raising the best kind of humans!" – Samantha Nau Ross, Brooke’s Mom</blockquote>
<p>Kids helping kids! The powerhouse group of friends made signs, organized duties, and showed up to raise money for pediatric brain cancer research! The bake sale was "for my friend’s brain tumor cure," as one child wrote on a handmade poster that hung at the event. In just a few hours, the group of friends raised $1,300!</p>
<figure style="float: left !important; clear: both; margin-left: 0px; padding-bottom: 15px; padding-right: 5px;"><img alt="" src="/media/igiby2bu/brooke-ross-check.jpg" style="width: 350px !important;" /></figure>
<p><strong>Dining to Donate for a Cure</strong><br />In May, for brain tumor awareness month, Brooke and her family hosted a Dine to Donate event where they partnered with The Lancaster Dispensing Company, which in turn donated a portion of profits from the restaurant to The Cure Starts Now. The Ross family chose The Cure Starts Now because of the family support provided by the Warrior Program. With a focus on research that gives hope to families who are facing a brain tumor diagnosis, The Cure Starts Now is a unique foundation that connects families and funds research.</p>
<p><em>"The Cure Starts Now holds a special place in our hearts." – The Ross Family</em></p>
<p>The Dining at DipCo – For a Cure event raised <strong>over $10,000</strong> during the month of May, just from the support of their community and all who ate at the restaurant!</p>
<figure style="float: right !important; clear: both; margin-left: 0px; padding-bottom: 15px; padding-right: 5px;"><img alt="" src="/media/nqcfmcbz/brooke-ross-family.jpg" style="width: 350px !important;" /></figure>
<p><strong>Hearts of Gold</strong><br />Once the Ross family gained momentum in their quest to raise funds for pediatric brain cancer research, they never thought about stopping! Soon after the Dining at DipCo fundraiser, Brooke gained the title of Brain Cancer Warrior Ambassador and signed up to participate in Hearts of Gold. Each year, The Cure Starts Now hosts a t-shirt fundraiser to raise awareness in September, which is Childhood Cancer Awareness Month. The fundraiser is made up of our Chapter and Ambassador families, who promote the fundraiser! The names of all the participating warriors and angels are represented within a heart on the shirt to always hold a reminder of all the children who have endured a brain cancer diagnosis.</p>
<p>Brooke and her family dominated this fundraiser when over 100 shirts were purchased in honor of Brooke to benefit pediatric brain cancer research!</p>
<blockquote>"We're also so grateful for those who have found ways to raise money to give back in honor of Brooke. We will never stop finding creative ways and trying to raise money in HOPE for a CURE for our baby girl and so many others who are fighting this fight now and for those who have yet to begin their fight!" - The Ross Family</blockquote>
<p>Brooke the Brave, as she is affectionately called, continues to inspire us and her community with her determination and resilience in the face of a challenging brain cancer diagnosis. The Cure Starts Now is honored to partner with them and to support her and her family along their journey. We can’t wait to see how they continue to put the "Fun" in "Fundraiser"!</p>
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<p>Lean more about Brooke or make a donation in her honor at <a href="https://donate2csn.org/BrookeR">donate2csn.org/BrookeR</a></p> https://thecurestartsnow.org/news/brooke-the-brave-a-girl-on-fire-for-fundraising/ Mon, 28 Aug 2023 11:42:33 -0500 https://thecurestartsnow.org/13025 Hero of the Year: A Journey Doctors Believed Improbable <p>Addison is a 10-year-old girl who carries around a black backpack everywhere she goes. Hanging from the backpack is a small clear tube that nearly touches the top of her shoe before climbing upward to the port in her chest. It contains chemotherapy medicine that is continuously dripped into her body, all day every day. On good days, she’ll skip down the hallways of The Cure Starts Now headquarters in Cincinnati. On worse days, her spark is absent from the office with only an email from her mom giving us a quick health update.</p>
<p>When Addison was 6 years old her parents took her to get ice cream and told her that she had a rare form of brain cancer called diffuse intrinsic pontine glioma (DIPG). Oblivious to what this would mean for her life, Addison merely responded with “okay” and continued enjoying her ice cream. While the weight of this diagnosis is sometimes lost on a child, her parents struggled to accept the doctor’s prognosis, that she only had 9 – 18 months to live. Parents, Heidi and AJ, were told by doctors to pull Addison from school and start making memories.</p>
<p>Addison was rushed into a world of medical discourse with terms like IV flush, radiation, and chemotherapy becoming a regular part of her vocabulary. Since her diagnosis, Addison has undergone 5 rounds of radiation totaling 72 sessions, brain surgery, and four clinical trials, with many scans, pokes, and pricks. Addison is nothing short of a miracle. Children diagnosed with this same cancer rarely survive past one year. Meanwhile, Addison has defied the odds and has been fighting for 50 months. Heidi refers to her daughter as “Addison’s Sunshine,” a well-earned nickname that honors Addison’s ability to stay positive and uplift the people around her while inspiring other families new to this diagnosis.</p>
<p>At The Cure Starts Now, we often refer to our kids as “Warriors” and “Fighters” with the hope that by personifying this cancer we might be able to take away a small burden from the battle our kids are facing.</p>
<blockquote>“I’ve gotten more emotional over the years because of what all has been happening,” Addison expressed, “It’s just something that happens because I’ve been going through cancer for four years now.”</blockquote>
<figure style="float: left !important; clear: both; margin-left: 0px; padding-bottom: 15px; padding-right: 5px;"><img alt="Hero of the Year" src="/media/p5eh40ve/addison-award.jpg" style="width: 350px !important;" /></figure>
<p>Her fight has never been easy and her journey has been long, but Addison and her family have held onto hope that the cure will be found. “Positivity and hope is what we cling to,” said Heidi. In their journey, Heidi and AJ discovered The Cure Starts Now and learned of our mission to fund vital pediatric brain cancer research. Addison has taken part in four clinical trials with three of them being funded by The Cure Starts Now. Currently, Addison is the first child in the world to receive a new combination of medicine that may have groundbreaking outcomes in our understanding of cancer treatments.</p>
<p>Addison was forced to grow up quickly in four years, but her parents are thankful that she has been given the time to grow up. The Cure Starts Now was honored to recognize Addison at this year’s Once in a Lifetime Gala as she was the recipient of the <strong>Hero of the Year</strong> award. In the gala’s 15-year history, this is the first time the Hero Award has been presented to a surviving DIPG warrior.</p>
<blockquote>“Addison is strong, courageous, and brave.” Said Heidi, “She gets her strength from all of the angels that fought so bravely before her and from the current warriors that are fighting. She is brave in hopes that she can make a difference for the next child.”</blockquote>
<p>The Cure Starts Now Foundation, headquartered in Cincinnati, funds trials all over the world. We are committed to finding the Homerun Cure, believing that in finding a cure for the toughest cancers like DIPG, we can find the cure for all cancer. Learn more about Addison and The Cure Starts Now at <a href="/support/view-heroes/addison-varns/" title="Addison Varns">https://thecurestartsnow.org/support/view-heroes/addison-varns/</a></p> https://thecurestartsnow.org/news/hero-of-the-year-a-journey-doctors-believed-improbable/ Wed, 10 May 2023 11:22:08 -0500 https://thecurestartsnow.org/12701 International Cancer Consortium Adds Cincinnati Expert <p><a href="/who-we-are/staff/brooke-desserich/" title="Brooke Desserich">Brooke Desserich</a>, Co-Founder and CEO of The Cure Starts Now Foundation was named as the official Patient Advocate for the Steering Committee for CONNECT Consortium as well as a member of the International Patient and Parent Advocacy Committee.  She brings over 15 years of experience with support to over 700 cancer families and development of The Cure Starts Now, a leading world-wide brain tumor research foundation.  A passionate advocate for collaboration and innovative research, she and her efforts have resulted in the founding support for CONNECT, delivering trials to five countries.</p>
<p><em>"On behalf of CONNECT, we express our sincere gratitude to Brooke Desserich for serving on our newly established international patient and parent advocacy committee, which will provide critically important input for the development, design, and conduct of our early phase clinical trials. We are so grateful to have Brooke's unique voice and perspective as a parent to inform concept selection, protocol writing, and consent language. As we expand our CONNECT trials globally, it is essential we place critical issues regarding quality of life, access and equity to trials at the forefront of the challenges we are addressing in our trials. We can only do this by listening to, understanding and acting on the truly diverse, global yet unique perspectives of patient and parent advocates, like Brooke, who make up this international committee."</em> - <strong>Dr. Maryam Fouladi, Chair, CONNECT Consortium</strong> | Professor co-executive director of the Pediatric Neuro-Oncology Program at Nationwide Children’s Hospital</p>
<figure style="float: left !important; clear: both; margin-left: 0px; padding-bottom: 15px; padding-right: 5px;"><img alt="CONNECT" src="/media/2437/connect-logo.png" style="width: 350px !important;"></figure>
<p><a href="https://connectconsortium.org/">CONNECT Consortium</a> is a cutting edge, international collaborative network of world class pediatric cancer centers focused on improving outcomes for children newly-diagnosed with high risk brain tumors such as <a href="https://www.dipg.org/facts/what-is-dipg/" title="What is DIPG">DIPG</a> and <a href="https://www.dipg.org/facts/what-is-dmg/" title="What is DMG">DMG</a>. CONNECT represents a revolutionary approach to cancer research as they conduct small pilot studies to assess feasibility and efficacy of promising new therapies. This approach fills the gap between other larger pediatric cancer groups looking at novel agents independently or national consortia trials which require enormous amounts of time and extensive research. The Cure Starts Now helped in the formation of CONNECT and has provided the operational seed funding to create this one of a kind consortium with a donation of over $2.7 million.</p>
<blockquote>The concept of CONNECT was born out of the understanding that families, whose children have been diagnosed with brain cancers like DIPG or Medulloblastoma, do not have the benefit of time to wait for the typical research trial cycle. Instead CONNECT understands we must find innovative ways to accelerate the process and to these families desperate for a cure. I am honored to be selected to represent the family perspective on these committees. <strong>Brooke Desserich, Co-Founder & CEO of The Cure Starts Now</strong></blockquote>
<p>Brooke’s journey began as a mother of a child diagnosed with diffuse intrinsic pontine glioma back in 2007.  Her efforts since then have touched and benefitted thousands of families who have and continue to battle pediatric brain cancer.  She has been recognized nationally as the Jacqueline Kennedy Onassis Award for Outstanding Public Service Benefiting Local Communities, one of the highest honors for philanthropic work in the world.   Her professionalism, entrepreneurial spirit and passion will surely add to the impact of the CONNECT consortium.</p>
<p><strong>CONNECT Consortium</strong>, Visit: <a href="https://connectconsortium.org/">https://connectconsortium.org/</a></p>
<p><strong>THE CURE STARTS NOW,</strong> Visit:  <a href="/" title="thecurestartsnow.org">www.thecurestartsnow.org</a></p>
<p style="text-align: center;"><strong>###</strong></p>
<p>The Cure Starts Now was started in honor of 6-year-old Elena Desserich, a Cincinnati girl who battled a rare, aggressive form of brain cancer known as DIPG. Today, The Cure Starts Now Foundation has over 41 chapters in three countries and is the only cancer foundation dedicated to finding the Homerun Cure™ for cancer by focusing on one of the rarest, most aggressive forms of cancer. Believing in more than just awareness, The Cure Starts Now, run by cancer families, has funded over $30 million in cancer research and support in conjunction with over 27 DIPG Collaborative partners and 700+ supporting families.  Research results include over 132 cutting edge research grants in 17 countries since 2007.</p> https://thecurestartsnow.org/news/international-cancer-consortium-adds-cincinnati-expert/ Mon, 20 Feb 2023 08:45:19 -0500 https://thecurestartsnow.org/12349 Playing video games is curing cancer! <p><em>NFL players and Gamers raise thousands for girl battling cancer</em></p>
<p><strong>Cincinnati, OH | February 14 — </strong>Social Media conglomerate The Dad, The Dad Gaming, and Channel 3 Gaming teamed up with The Cure Starts Now to raise $15,000 for local 10-year-old girl Addison Varns battling pediatric brain cancer.</p>
<p>Top content creators from The Dad and New England Patriots players Cody Davis and JJ Taylor were connected with Addison by The Cure Starts Now to fundraise in her honor during their video game livestream. The donations collected during the livestream benefit pediatric brain cancer research as part of The Cure Starts Now’s Nerf Cancer Hearts for Heroes event. The Cure Starts Now will compile all donor messages onto hand-written valentines that will be mailed to Addison and other brain cancer heroes to bring a big smile to their little faces!</p>
<figure style="float: left !important; clear: both; margin-left: 0px; padding-bottom: 15px; padding-right: 5px;"><img alt="Addison Varns" src="/media/kc3nfoau/addisonvarns.jpg" style="width: 350px !important;"></figure>
<p>Addison is currently fighting DIPG (Diffuse Intrinsic Pontine Glioma). Addison is a sweet and spunky 10-year-old girl who is a ray of sunshine. According to <a href="https://www.dipg.org/facts/what-is-dipg/" title="What is DIPG">dipg.org</a>, the 5-year survival rate for DIPG patients is 2%. Thanks in part to a radical and promising phase 2 clinical trial funded by The Cure Starts Now, Addison is more than 3 years post diagnosis.</p>
<p>The Dad began their epic fundraiser by spotlighting Addison and her dad AJ on their social media! They shared Addison and AJ’s story as part of their “Father Figure” feature across their many social media accounts and platforms. In just a few days, The Dad doubled their fundraising goal of $5k to raise over $10k before the actual live stream even took place. The Dad Gaming and Channel 3 proceeded to wow the world by holding their Rocket League showdown on Twitch, bringing in another $5k in one night to total $15,275 total. The gamers live streamed themselves playing the popular game Rocket League against NFL players and randomly selected audience members for a super fun, inspiring showdown- all for an amazing little girl battling cancer. To learn more and donate visit <a href="https://NerfCancer.Org">NerfCancer.Org</a></p>
<p><em><u>About The Cure Starts Now</u></em></p>
<p><em>The Cure Starts Now was started in honor of 6-year-old Elena Desserich, a Cincinnati girl who battled a rare, aggressive form of brain cancer known as DIPG. Today, The Cure Starts Now Foundation has over 40 locations in three countries and is the only cancer foundation dedicated to finding the Homerun Cure for cancer by focusing on one of the rarest, most aggressive forms of cancer. Believing in more than just awareness, The Cure Starts Now has funded over $29.5 million in cancer research and support, resulting in over 132 cutting edge research grants in 17 countries since 2007. Learn more about The Cure Starts Now and their mission to find the Homerun Cure for cancer at </em><a href="https://www.thecurestartsnow.org"><em>https://www.thecurestartsnow.org</em></a><em>.</em></p>
<p><em><u>About Channel 3</u></em></p>
<p><em>Channel 3 makes gaming (even more) fun, positive, and social for gamers of ALL SKILL LEVELS with community, content, and events. The foundation of that is a brand-new social network for gamers. Learn more at channel3.gg</em></p>
<p>Learn more about The Dad <a href="http://www.thedad.com/">www.thedad.com/</a> or Channel 3 at <a href="http://www.channel3.gg">www.channel3.gg</a> </p>
<p>Learn more about Nerf Cancer at <a href="http://www.nerfcancer.org">www.nerfcancer.org</a></p>
<p>Learn more about the foundation at <a href="http://www.thecurestartsnow.org">www.thecurestartsnow.org</a>, or follow <a href="http://facebook.com/TheCureStartsNow/">facebook.com/TheCureStartsNow/</a> for updates.</p> https://thecurestartsnow.org/news/playing-video-games-is-curing-cancer/ Thu, 16 Feb 2023 12:16:13 -0500 https://thecurestartsnow.org/12344 Twin Powers "Activate" as 10yr old Twin Sister Honors Her Brother with "Grant For Grant" Effort <p><em>Julia Wolf of Cincinnati raised over $50,000 in 2021, then again in 2022. She has even bigger plans this year.</em></p>
<p><strong>Cincinnati, OH | January 2023 — </strong>When Julia Wolf prepared to spend her 8<sup>th</sup> birthday without her twin brother Grant, she decided to have a $8 birthday fundraiser in his honor with the hope of raising a few hundred dollars.  Her efforts gained attention in her community of Loveland, Ohio who formed “Grant’s Wolf Pack” and raised $50,000.  She added to that effort in 2022 by raising another $50,000.  She donated the money to The Cure Starts Now which helped fund medical grants at Cincinnati Children’s Hospital Medical Center. The check presentation took place during The Cure Starts Now’s Once in A Lifetime Gala at Duke Energy Center.</p>
<figure style="float: left !important; clear: both; margin-left: 0px; padding-bottom: 15px; padding-right: 5px;"><img alt="Grant Wolf" src="/media/w35hwtgp/grant_wolf.jpg" style="width: 350px !important;"></figure>
<p>Grant Wolf was a Loveland School student and a kind-hearted, athletic 7-year-old boy who loved any and all sports especially playing baseball, basketball, and golf.  As a first grader, he was diagnosed with <a href="https://www.medulloblastoma.org/medullo-facts/what-is-medulloblastoma/" title="What is Medulloblastoma?">medulloblastoma</a>.  After 9 months of medulloblastoma treatment, proton radiation and chemo, Grant’s scans were stable and he was able to enjoy a wonderful summer playing baseball, acting like Jordan Spieth on the golf course or shooting hoops with his favorite Xavier University jersey. By September 2020, his cancer had returned in his brain and spine. He began immunotherapy and more radiation but died on January 22, 2021.</p>
<figure style="clear: both; padding-bottom: 15px;"><img alt="Wolf Pack" src="/media/bjfmm1pe/grant-wolf-pack.jpg" style="width: 150px !important;"></figure>
<p>This year for her 10<sup>th</sup> birthday in February, Julia is hoping to fund a third medical grant at Cincinnati Children’s Hospital in Grant’s honor.  She has themed her effort “GRANT FOR GRANT.”  Grant’s family and friends, known locally as “Grant’s Wolf Pack”, will surely be right there beside her honoring Grant and making a difference for all the children who have and continue to battle pediatric brain cancer.</p>
<p style="text-align: center; clear: both;">###</p>
<p><strong>For more information regarding Grant:</strong>   <a href="/support/view-heroes/grant-wolf/">https://thecurestartsnow.org/support/view-heroes/grant-wolf/</a></p>
<p><strong>To Make a Donation:  </strong><a href="https://Grant4Grant.com">Grant4Grant.com</a> or <a href="https://www.facebook.com/donate/551020326748524/">https://www.facebook.com/donate/551020326748524/</a></p>
<p><strong><em>Julia Wolf on WLWT TV:</em></strong> <a href="https://www.wlwt.com/article/9-year-old-loveland-girl-money-cure-for-brain-cancer-julia-wolf/40096936">https://www.wlwt.com/article/9-year-old-loveland-girl-money-cure-for-brain-cancer-julia-wolf/40096936</a></p>

<div class="embed-container"><iframe src="https://www.youtube.com/embed/x73Qb0UEe24" frameborder="0" allowfullscreen=""></iframe></div>
<p>About The Cure Starts Now</p>
<p><em>The Cure Starts Now was started in honor of 6-year-old Elena Desserich, a Cincinnati girl who battled a rare, aggressive form of brain cancer known as DIPG. Today, The Cure Starts Now Foundation has over 40 locations in three countries and is the only cancer foundation dedicated to finding the Homerun Cure for cancer by focusing on one of the rarest, most aggressive forms of cancer. Believing in more than just awareness, The Cure Starts Now has funded over $29.5 million in cancer research and support, resulting in over 132 cutting edge research grants at over 100 hospitals in 17 countries since 2007. Learn more about The Cure Starts Now and their mission to find the Homerun Cure™ for cancer at </em><a href="https://www.thecurestartsnow.org"><em>https://www.thecurestartsnow.org</em></a><em>.</em></p>
<p>For updates, follow:  <a href="http://facebook.com/TheCureStartsNow/">facebook.com/TheCureStartsNow/</a></p>
<p><img alt="Julia Wolf" src="/media/kuphixd2/julia-wolf.jpg" style="max-width: 100%;"></p>
<p></p> https://thecurestartsnow.org/news/twin-powers-activate-as-10yr-old-twin-sister-honors-her-brother-with-grant-for-grant-effort/ Mon, 23 Jan 2023 12:58:29 -0500 https://thecurestartsnow.org/12260 Tom & Chee to Debut New Handcrafted Melt to Benefit The Cure Starts Now <p><em>“COWBOY MELT COMES TO CINCINNATI”</em></p>
<p><strong>Cincinnati, OH - January 2023</strong> – Cincinnati-based restaurant brand <a href="https://www.tomandchee.com/">Tom & Chee</a> has partnered up with The Cure Starts Now to offer the new southwest themed COWBOY MELT for a limited time.  They invite all your family and friends to “giddy up” and enjoy this amazing creation which will be available until February 12<sup>th</sup>.  A portion of sales will benefit The Cure Starts Now to help fund pediatric brain cancer research.</p>
<p>"The Cowboy" was the collaboration of Jeff and Allison Thomas along with John Gerth’s team at Tom & Chee.  Jeff and Allison won the chance to create their very own Tom & Chee sandwich at The Cure Starts Now’s 14<sup>th</sup> annual Once in a Lifetime Gala.  With a love for southwestern cuisine, The Cure Starts Now, and Tom & Chee, it was an easy decision. <em>“We are big fans of the Southwestern Street Corn Salad and the creative team at Tom & Chee hit a homerun with this combination.”</em> said Allison Thomas.<br><br><br></p>
<figure style="float: left !important; clear: both; padding-bottom: 15px;"><img alt="Cowboy Melt" src="/media/4rhf3jsh/dsc_0120.jpg" style="width: 350px !important;"></figure>
<p>The new Cowboy Melt is a delicious combination of oven-roasted chicken, pepper jack cheese, a fire roasted corn mix and tortilla strips topped with chipotle ranch dressing on wheat.  It will be available at all four Cincinnati based locations beginning Tuesday January 17 – Sunday, February 12.</p>
<blockquote style="clear: both;">“Supporting the organizations that work tirelessly to improve the lives of others in our community is and has been a longstanding goal of Tom & Chee.  With The Cowboy, we get to carry out and act on that belief in delicious, tastebud wrangling fashion,” said Roger David, President and CEO of Tom & Chee.  “We cannot wait for Cincinnati to taste this amazing creation and help the fight against childhood cancer.”</blockquote>
<p><em>“The Cure Starts Now is so very excited about the Tom & Chee Cowboy Melt and hope everyone comes out to support our kids and families fighting cancer,”</em> said Brook Desserich Executive Director and Founder of The Cure Starts Now. <em>“Tom & Chee continue to be an amazing partner for us and the entire community.  They are an excellent example of how great organizations step up to make a difference in the fight against cancer.”</em></p>
<p style="text-align: center;"><em>###</em></p>
<p>About Tom & Chee:<em><br><br></em>Tom & Chee serves much more than simple grilled cheese – it’s a sensory experience that starts with great service and ends with satisfaction. From adventurous, handcrafted melts to savory soups and fresh salads, the menu offers elevated comfort food, with options like gluten-free bread, vegan cheese and vegan/vegetarian menu items to satisfy every guest. What began in a small tent next to an ice-skating rink in Cincinnati’s Fountain Square quickly but quietly grew to multiple stores in the Cincinnati market and then began franchising. Tom & Chee has been featured on ABC's Shark Tank, The Chew, and The Travel Channel's Man vs. Food Nation and Amazing Eats. The Today Show named their Grilled Cheese Donut one of the “Best Sandwiches in America.” For more information, visit <a href="http://www.tomandchee.com">www.tomandchee.com</a>.<em><br><br></em></p>
<p>About The Cure Starts Now:  <br><br>The Cure Starts Now was started in honor of 6-year-old Elena Desserich, a Cincinnati girl who battled a rare, aggressive form of brain cancer known as DIPG. Today, The Cure Starts Now Foundation has over 39 chapters in three countries and is the only cancer foundation dedicated to finding the Homerun Cure™ for cancer by focusing on one of the rarest, most aggressive forms of cancer.  For more information, visit https://thecurestartsnow.org/<br><br>Media Contact for additional details / pictures or interview (with food):   </p>
<p>Lauren Hall <a href="mailto:Lhall@scootermediaco.com">Lhall@scootermediaco.com</a>  | (513) 203-0673</p>
<p>Jim Getgey | <a href="mailto:Jim@thecurestartsnow.org">Jim@thecurestartsnow.org</a> | (513) 309-0147</p> https://thecurestartsnow.org/news/tom-chee-to-debut-new-handcrafted-melt-to-benefit-the-cure-starts-now/ Fri, 20 Jan 2023 09:29:38 -0500 https://thecurestartsnow.org/12256 Characteristics of children ≤36 months of age with DIPG: A report from the international DIPG registry <p><em>As a supplement to the Journal of Clinical Oncology 2018 publishing from the <a href="https://dipgregistry.org" target="_blank" rel="noopener">International DIPG/DMG Registry</a> and statistics of DIPG and DMG, the International DIPG/DMG Registry releases new age specific findings and long-term survival prognosis.</em></p>
<p><strong>Background</strong></p>
<p>Children ≤36 months with diffuse intrinsic pontine glioma (DIPG) have increased long-term survival (LTS, overall survival (OS) ≥24 months). Understanding distinguishing characteristics in this population is critical to improving outcomes.</p>
<p><strong>Methods</strong></p>
<p>Patients ≤36 months at diagnosis enrolled on the International DIPG Registry (IDIPGR) with central imaging confirmation were included. Presentation, clinical course, imaging, pathology and molecular findings were analyzed.</p>
<p><strong>Results</strong></p>
<p>Among 1183 patients in IDIPGR, 40 were eligible (median age: 29 months). Median OS was 15 months. Twelve patients (30%) were LTS, 3 (7.5%) very long-term survivors ≥5 years. Among 8 untreated patients, median OS was 2 months. Patients enrolled in the registry but excluded from our study by central radiology review or tissue diagnosis had median OS of 7 months. All but 1 LTS received radiation. Among 32 treated patients, 1-, 2-, 3-, and 5-year OS rates were 68.8%, 31.2%, 15.6% and 12.5%, respectively. LTS had longer duration of presenting symptoms (<em>P</em> = .018). No imaging features were predictive of outcome. Tissue and genomic data were available in 18 (45%) and 10 patients, respectively. Among 9 with known H3K27M status, 6 had a mutation.</p>
<p><strong>Conclusions</strong></p>
<p>Children ≤36 months demonstrated significantly more LTS, with an improved median OS of 15 months; 92% of LTS received radiation. Median OS in untreated children was 2 months, compared to 17 months for treated children. LTS had longer duration of symptoms. Excluded patients demonstrated a lower OS, contradicting the hypothesis that children ≤36 months with DIPG show improved outcomes due to misdiagnosis.</p>
<p><span class="button"><a href="https://doi.org/10.1093/neuonc/noac1231" target="_blank" rel="noopener">Full-Text Study</a></span></p> https://thecurestartsnow.org/news/characteristics-of-children-36-months-of-age-with-dipg-a-report-from-the-international-dipg-registry/ Tue, 27 Dec 2022 11:44:54 -0500 https://thecurestartsnow.org/12174 The Cure Starts Now Raises Over $500,000 for Pediatric Brain Cancer Research During Annual Giving First Campaign <p><strong>Cincinnati, OH | Nov 15</strong> - The Cure Starts Now Foundation headquartered in Cincinnati, OH with 39 chapters around the world showcases their innovative ways once again with their GIVING FIRST efforts.</p>
<blockquote>“GIVING FIRST is our effort to highlight the need to put our kids first because they don’t deserve the leftovers of Holiday shopping.  Currently Giving Tuesday is scheduled for Tuesday November 29.  This is after Black Friday, Small Business Saturday, and Cyber Monday.  As a society we value our kids and families, they are our top priority, so our campaign does just that”.  Brooke Desserich – Co-Founder The Cure Starts Now.</blockquote>
<p>The foundation of The Cure Starts Now’s GIVING FIRST efforts started as an 8-hour online Give-A-Thon on Tuesday November 15, prior to all the holiday shopping dates.  The online portion included a broadcast style event highlighting many of their 39 chapters, and families battling pediatric brain cancer. They also recruit over 100 families who advocate and fundraise on their behalf throughout the day and weeks preceding the official Giving Tuesday date of November 29.</p>
<blockquote>“It is an amazing experience as families from across the entire country are involved and we have some committed businesses that participate and enhance our efforts.  Thanks to matching donors, we are able to 3x match donations up to $117,000 with 100% of all donations going towards research.  Our commitment to funding research is a key differential and very important component for our team and our donors”. Jim Getgey – Marketing Director The Cure Starts Now</blockquote>
<p>The Cure Starts Now will continue to push hard through the end of the year as there are still some promising grants that need funding.  This is even after they had a record-breaking year funding over $4.5 million in research over the annual grant cycle. The Cure Starts Now has funded <strong>$29,506,047</strong> in pediatric brain cancer research and support in partnership with the DIPG / DMG Collaborative. This includes <strong>132 grants</strong> at over <strong>100 hospitals</strong> in <strong>17 </strong><strong>countries since 2007</strong><strong>.</strong></p>
<p><strong><u>About The Cure Starts Now</u></strong> - The Cure Starts Now was started in honor of 6-year-old Elena Desserich, a Cincinnati girl who battled a rare, aggressive form of brain cancer known as DIPG. Today, The Cure Starts Now Foundation has 39 chapters in three countries and is the only cancer foundation dedicated to finding the Homerun Cure™ for cancer by focusing on one of the rarest, most aggressive forms of cancer. Learn more about The Cure Starts Now and their mission to find the Homerun Cure™ for cancer at <a href="https://www.thecurestartsnow.org">https://www.thecurestartsnow.org</a>.</p>
<p>Lean more or donate to their GIVING FIRST efforts at <a href="https://give-first.org/"><strong>https://give-first.org/</strong></a>. Learn more about the foundation at <a href="http://www.thecurestartsnow.org/">www.thecurestartsnow.org</a>, or follow <a href="http://facebook.com/TheCureStartsNow/">facebook.com/TheCureStartsNow/</a></p>
<p><strong>Media Contact: Jim Getgey </strong></p>
<p><strong>O:  513.772.4888</strong><strong> | </strong><strong>C:  513.309.0147 </strong><strong>| </strong><strong><a href="mailto:Jim@TheCureStartsNow.org">Jim@TheCureStartsNow.org</a><a href="mailto:Jim@TheCureStartsNow.org"></a></strong></p>

<div class="embed-container"><iframe src="https://www.youtube.com/embed/rHjJeOzC4J0" frameborder="0" allowfullscreen=""></iframe></div> https://thecurestartsnow.org/news/the-cure-starts-now-raises-over-500-000-for-pediatric-brain-cancer-research-during-annual-giving-first-campaign/ Thu, 15 Dec 2022 13:25:28 -0500 https://thecurestartsnow.org/12151 The Cure Starts Now Funding Top 10 Breakthroughs <p><em>Cincinnati recognized by Physics World for Top 10 Breakthrough of 2022</em></p>
<p><strong>Cincinnati, OH - December 13</strong> – For those that live in the Tri-State area, Cincinnati is surely a very special place. Whether it is building amazing soccer arenas, making some of the world’s best products or having some of the top medical facilities in the world, it is truly an amazing place. It has now been recognized by <em>Physics World</em> as they announce their <a href="https://physicsworld.com/a/physics-world-reveals-its-top-10-breakthroughs-of-the-year-for-2022/">Top 10 Breakthroughs of the Year for 2022</a> which span everything from quantum and medical physics to astronomy and condensed matter. Could it be possible that the #1 Physics World Breakthrough of 2022 is from Cincinnati?</p>
<p>The recognition was given to <a href="https://med.uc.edu/landing-pages/faculty-profile/index/pubs/daugheec">Emily Daugherty</a> from the University of Cincinnati in the US and collaborators working on the <a href="https://clinicaltrials.gov/ct2/show/NCT04592887">FAST-01 trial</a> for performing the <a href="https://physicsworld.com/a/first-trial-in-humans-reveals-promise-of-flash-proton-therapy/">first clinical trial of FLASH radiotherapy</a> and the first-in-human use of FLASH proton therapy.</p>
<p>FLASH radiotherapy is an emerging treatment technique in which radiation is delivered at ultrahigh dose rates, an approach that is thought to spare healthy tissue while still effectively killing cancer cells. Using protons to deliver the ultrahigh-dose-rate radiation will allow treatment of tumors located deep inside the body.</p>
<p><span class="button"><a href="https://www.cincinnatichildrens.org/service/p/proton-therapy" target="_blank" rel="noopener">CCHMC Proton Therapy</a></span></p>
<figure><img alt="CCHMC Flash Grant" src="/media/ammj5lqy/cchmc-lu-153867.jpg" style="width: 400px; height: auto;" />
<figcaption></figcaption>
</figure>
<p>In November of 2022, The Cure Starts Now Foundation, headquartered in Cincinnati, funded a $153,867 grant for <a href="/research/research-and-grants/cincinnati-childrens-hospital-medical-center-2022-11-10-2/" title="Cincinnati Children's Hospital Medical Center: 2022-11-10 (2)"><em>Combining </em><em>innovative proton radiotherapy with targeted and immune therapies to treat DMG/DIPG</em></a>. This grant was designed to take the next step with this innovative FLASH therapy and look towards options for brain cancers. The Cure Starts Now is responsible for funding $29,506,047 towards pediatric brain cancer research and support in partnership with its DIPG/DMG Collaborative partners. They have funded 132 grants to over 100 hospitals in 17 countries since their founding.</p>
<blockquote>"Our hometown is Cincinnati and Children’s Hospital Medical Center has an amazing staff and resources for pediatric brain cancer. We have and will continue to fund their efforts as their results keep getting better and we know the Homerun Cure™ is out there. We are thrilled that Physics World is recognizing the worldwide impact Cincinnati is making." - Keith Desserich, Chairman of The Cure Starts Now's Board of Directors</blockquote>
<p>In their last grant cycle, The Cure starts now was able to fund 19 research grants valued at $4,540,000 across the world.</p>
<p style="text-align: center;">###</p>
<p><em>The Cure Starts Now was started in honor of 6-year-old Elena Desserich, a Cincinnati girl who battled a rare, aggressive form of brain cancer known as DIPG. Today, The Cure Starts Now Foundation has over 39 chapters in three countries and is the only cancer foundation dedicated to finding the Homerun Cure™ for cancer by focusing on one of the rarest, most aggressive forms of cancer. </em>For more information, please contact: Jim Getgey | (513) 309-0147 | <a href="mailto:Jim@thecurestartsnow.org">Jim@thecurestartsnow.org</a></p>
<p><strong>For more information: The Cure Starts Now | DIPG/DMG Collaborative | Specific Grants:</strong><br /><strong><a href="/">https://thecurestartsnow.org/</a> | <a href="https://dipgcollaborative.org/partners/">https://dipgcollaborative.org/partners/</a></strong><br /><strong><a href="/research/research-and-grants/">https://thecurestartsnow.org/research/research-and-grants/</a></strong><br /><strong>To Donate: <a href="https://donate2csn.org/">https://donate2csn.org/</a></strong></p> https://thecurestartsnow.org/news/the-cure-starts-now-funding-top-10-breakthroughs/ Thu, 15 Dec 2022 11:13:00 -0500 https://thecurestartsnow.org/12149 The Cure Starts Now Foundation Sets Record <p><em>Pediatric Brain Cancer Research Teams receive over $4.5 million dollars</em></p>
<p><strong>Cincinnati, OH— December 11</strong>—The Cure Starts Now Foundation continues to grow and continues to lead the worldwide effort to eradicate all cancers with the Homerun Cure™.</p>
<p>Chairman of the Board of Directors Keith Desserich recently announced the foundation would be funding <strong>19 grants this grant cycle valued at $4,540,000</strong>.</p>
<blockquote>"This was the largest grant cycle we have seen in our 15 years and highlights that our Homerun Strategy is working. While we are excited that we are seeing more grant requests and setting records funding these qualified grants, there are still 3 grants sitting on my desk that are yellow lighted until we see about $350,000 in additional funding support. Our efforts are working and the medical community is doing some amazing work."</blockquote>
<p>Since their founding in 2007, The Cure Starts Now has funded 132 grants at over 100 hospitals across 17 countries. In association with their DIPG/DMG Collaborative Partners, they have funded $29,506,047 for pediatric brain cancer research and support across the world.</p>
<blockquote>"It is not just us alone. Our chapters, ambassador families, and supporters are all working together so we can fund more research and take care of more families. We like to live up to our tagline ‘family never fights alone’ and we are here for all the families that have fought or are currently in the fight." - Brooke Desserich, co-founder and Executive Director</blockquote>
<p>The Cure Starts Now has 39 chapters around the world and is one of the leading funders of pediatric brain cancer research. Cincinnati Children’s Hospital Medical Center recently honored their efforts with naming rights to <strong>The Cure Starts Now</strong> <strong>Brain Tumor Center</strong> in Clifton, Ohio. <a href="https://www.cincinnatichildrens.org/service/b/brain-spinal">https://www.cincinnatichildrens.org/service/b/brain-spinal</a></p>

<div class="embed-container"><iframe src="https://www.youtube.com/embed/MgFgnithqww" frameborder="0" allowfullscreen=""></iframe></div>
<p style="text-align: center;">###</p>
<p><em>The Cure Starts Now was started in honor of 6-year-old Elena Desserich, a Cincinnati girl who battled a rare, aggressive form of brain cancer known as DIPG. Today, The Cure Starts Now Foundation has over 39 chapters in three countries and is the only cancer foundation dedicated to finding the Homerun Cure™ for cancer by focusing on one of the rarest, most aggressive forms of cancer. </em>For more information, please contact: Jim Getgey | (513) 309-0147 | <a href="mailto:Jim@thecurestartsnow.org">Jim@thecurestartsnow.org</a></p>
<p><strong>For more information: The Cure Starts Now | DIPG/DMG Collaborative | Specific Grants:</strong><br><strong><a href="/">https://thecurestartsnow.org/</a> | <a href="https://dipgcollaborative.org/partners/">https://dipgcollaborative.org/partners/</a></strong><br><strong><a href="/research/research-and-grants/">https://thecurestartsnow.org/research/research-and-grants/</a></strong><br><strong>To Donate: <a href="https://donate2csn.org/">https://donate2csn.org/</a></strong></p> https://thecurestartsnow.org/news/the-cure-starts-now-foundation-sets-record/ Mon, 12 Dec 2022 09:55:27 -0500 https://thecurestartsnow.org/12145 Research Update: Cell Analysis Reveals Possible Way to Slow Tumor Growth in Medulloblastoma <p><em>The following article originally appeared on <a href="https://scienceblog.cincinnatichildrens.org/single-cell-atlas-reveals-origin-of-an-aggressive-brain-tumor/" target="_blank" rel="noopener">Cincinnati Children's Research Horizons</a>. The research work is thanks to partial funding by The Cure Starts Now.</em></p>
<p><strong>Study led by experts in Cincinnati, Chicago, Toronto, England and China sheds light on the most aggressive form of medulloblastoma, opens new doors to understanding brain development</strong></p>
<p>Studying mice has filled encyclopedias with breakthrough medical discoveries. But when it comes to brain cancers, the little rodents have long exhibited fundamental limitations.</p>
<p>Among them: the human cerebellum has 750 times as much surface area as a mouse, all of it laced with more types of progenitor cells that help the fetal brain grow during pregnancy. That means many things can go wrong in human brain development that simply cannot be seen by studying mice.</p>
<p>Now a multinational team of scientists led by experts at Cincinnati Children’s has developed an “atlas” of human fetal brain development so detailed that it details growth steps all the way down to changes occurring at the single-cell level. Details were <a href="https://www.nature.com/articles/s41586-022-05487-2">published Nov. 30</a> in <em>Nature.</em></p>
<p>The investigators say this atlas will be a vital resource for brain research for years to come. In fact, it has already opened doors that someday may improve lives.</p>
<p>“This study took the effort of 40 experts for nearly three years to complete. Their work included dozens of experiments using several of the very latest technologies in genomic science to reach this point,” says senior author <a href="https://www.cincinnatichildrens.org/bio/l/qing-richard-lu">Qing Richard Lu, PhD</a>, scientific director<strong>,</strong> Brain Tumor Center, Division of Experimental Hematology and Cancer Biology at Cincinnati Children’s. “It was worth so much effort because this new map guided us to a targetable vulnerability for therapeutic intervention of aggressive medulloblastomas.”</p>
<p><strong>Hunting Cell-by-cell to Pinpoint the Birth of a Killer</strong></p>
<p>Medulloblastomas are fast-growing malignant tumors that form in the back of the brain. They often disrupt balance and fine motor skills before going on to cause further damage.</p>
<p>Overall, the five-year survival rate for this type of cancer is about 72%. However, about 27% of people with this form of cancer (most commonly children ages 4 to 16) develop “Group 3” aggressive medulloblastomas, which have five-year survival rates of only 20 to 30%.</p>
<p>Now, thanks to data from the new fetal brain atlas, scientists have discovered a collection of progenitor cells (cells that make other types of cells) that give rise to group 3 medulloblastomas. This population of cells is rare in mouse brains, and exists only temporarily in the human brain as one type of cell morphs into another during fetal development.</p>
<p>The team found these cells by comparing vast collections of data from brain tissue that developed tumors and tissue that did not. Now they have defined a hierarchy of cell formation as the brain grows, plus the trajectories or paths that progenitor cells follow as they form new types of brain cells or tumor cells under pathological conditions.</p>
<p>Those transition moments appear critical. When healthy cell formation goes off-track, the fetal brain grows too many cells with excess activation of a potential cancer-causing gene called <em>MYC</em>. These cells wind up driving tumor formation.</p>
<p><strong>Cell Analysis Reveals Possible Way to Slow Tumor Growth</strong></p>
<p>After identifying this new progenitor cell population as a potential root of group 3 medulloblastoma, the research team turned again to mouse models to learn if the newly discovered progenitor cells could be attacked.  They found that eliminating or sharply reducing the activity of either of two genes, <em>SOX11</em> or <em>HNRNPH1</em>, highly abundant in the progenitor cells, reversed tumor formation triggered by hyperactivity of the cancer-driving <em>MYC</em> gene.</p>
<p>When mice were given human tumor cells with high levels of <em>MYC</em> but lacking these genes, tumor growth was inhibited and the animals survived longer.</p>
<blockquote>“This is exciting because these genes may serve as a potential target for future therapy of aggressive medulloblastoma,” Lu says.</blockquote>
<p><strong>Next Steps</strong></p>
<p>Early success in mouse models represents the first step in a journey that could still take years to produce a treatment to help future children diagnosed with this aggressive form of brain tumor.</p>
<p>Developing a test to detect the activity of the two <em>MYC</em>-regulating genes could help identify patients who may benefit from more aggressive chemotherapy in the clinic. Lu and colleagues also have begun work on identifying small-molecule compounds that can target the pathways supporting the aggressive subset of medulloblastoma.</p>
<blockquote>“While this study focuses on medulloblastoma, the new atlas will help accelerate understanding of other conditions that result from disruptions in healthy early brain development, such as autism, attention deficit-hyperactivity disorder (ADHD), and developmental dyslexia, and pediatric cerebellar damage,” Lu says.</blockquote> https://thecurestartsnow.org/news/research-update-cell-analysis-reveals-possible-way-to-slow-tumor-growth-in-medulloblastoma/ Wed, 30 Nov 2022 13:22:30 -0500 https://thecurestartsnow.org/12122 Research Update: Volumetric endpoints in diffuse intrinsic pontine glioma: comparison to cross-sectional measures and outcome correlations in the International DIPG/DMG Registry <p><em>The following study was funded in part by the DIPG/DMG Collaborative and The Cure Starts Now:</em></p>
<p><strong>Background</strong></p>
<p>Cross-sectional tumor measures are traditional clinical trial endpoints; however volumetric measures may better assess tumor growth. We determined the correlation and compared the prognostic impact of cross-sectional and volumetric measures of progressive disease (PD) among patients with DIPG.</p>
<p><strong>Methods</strong></p>
<p>Imaging and clinical data were abstracted from the International DIPG Registry. Tumor volume and cross-sectional product (CP) were measured with mint Lesion™ software using manual contouring. Correlation between CP and volume (segmented and mathematical [ellipsoid] model) thresholds of PD were assessed by linear regression. Landmark analyses determined differences in survival (via log-rank) between patients classified as PD versus non-PD by CP and volumetric measurements at 1, 3, 5, 7, and 9 months postradiotherapy (RT). Hazard ratios (HR) for survival after these time points were calculated by Cox regression.</p>
<p><strong>Results</strong></p>
<p>A total of 312 MRIs (46 patients) were analyzed. Comparing change from the previous smallest measure, CP increase of 25% (PD) correlated with a segmented volume increase of 30% (R<sup>2</sup><span> = 0.710), rather than 40% (spherical model extrapolation). CP-determined PD predicted survival at 1 month post-RT (HR = 2.77), but not other time points. Segmented volumetric-determined PD (40% threshold) predicted survival at all imaging timepoints (HRs = 2.57, 2.62, 3.35, 2.71, 16.29), and 30% volumetric PD threshold predicted survival at 1, 3, 5, and 9 month timepoints (HRs = 2.57, 2.62, 4.65, 5.54). Compared to ellipsoid volume, segmented volume demonstrated superior survival associations.</span></p>
<p><strong>Conclusions</strong></p>
<p>Segmented volumetric assessments of PD correlated better with survival than CP or ellipsoid volume at most time points. Semiautomated tumor volume likely represents a more accurate, prognostically-relevant measure of disease burden in DIPG.</p>
<p><span class="button"><a href="https://doi.org/10.1093/neuonc/noac037" target="_blank" rel="noopener">Full-Text Study</a></span></p> https://thecurestartsnow.org/news/research-update-volumetric-endpoints-in-diffuse-intrinsic-pontine-glioma-comparison-to-cross-sectional-measures-and-outcome-correlations-in-the-international-dipgdmg-registry/ Wed, 21 Sep 2022 13:36:42 -0500 https://thecurestartsnow.org/11982 Research Update: The intrinsic and microenvironmental features of diffuse midline glioma: Implications for the development of effective immunotherapeutic treatment strategies <p><em>The following study was funded in part by the DIPG/DMG Collaborative and The Cure Starts Now:</em></p>
<p><strong>Abstract</strong></p>
<p>Diffuse midline glioma (DMG), including those of the brainstem (diffuse intrinsic pontine glioma), are pediatric tumors of the central nervous system (CNS). Recognized as the most lethal of all childhood cancers, palliative radiotherapy remains the only proven treatment option, however, even for those that respond, survival is only temporarily extended. DMG harbor an immunologically “cold” tumor microenvironment (TME) with few infiltrating immune cells. The mechanisms underpinning the cold TME are not well understood. Low expression levels of immune checkpoint proteins, including PD-1, PD-L1, and CTLA-4, are recurring features of DMG and likely contribute to the lack of response to immune checkpoint inhibitors (ICIs). The unique epigenetic signatures (including stem cell-like methylation patterns), a low tumor mutational burden, and recurring somatic mutations (H3K27M, <em>TP53</em>, <em>ACVR1</em>, <em>MYC</em>, and <em>PIK3CA</em>), possibly play a role in the reduced efficacy of traditional immunotherapies. Therefore, to circumvent the lack of efficacy thus far seen for the use of ICIs, adoptive cell transfer (including chimeric antigen receptor T cells) and the use of oncolytic viruses, are currently being evaluated for the treatment of DMG. It remains an absolute imperative that we improve our understanding of DMG’s intrinsic and TME features if patients are to realize the potential benefits offered by these sophisticated treatments. Herein, we summarize the limitations of immunotherapeutic approaches, highlight the emerging safety and clinical efficacy shown for sophisticated cell-based therapies, as well as the evolving knowledge underpinning the DMG-immune axis, to guide the development of immunotherapies that we hope will improve outcomes.</p>
<p><strong>Conclusion</strong></p>
<p>Despite 50 years of research, survival for patients diagnosed with DIPG remains just 9-11 months. Patients diagnosed with all forms of DMG are told “there are no treatments.” IO strategies have shown great promise in extending survival for cancers of other origins, but similar benefit is yet to be realized in the DMG setting. The unique epigenetic landscape, inter- and intra-somatic heterogeneity, and immunologically cold TME of DMG, highlight areas of research that require focused attention if we are to exploit the potential of immunotherapeutic approaches for patients with DMG. We believe that although limited response to ICI has been seen thus far, combinations with precision therapies may prove to increase response rates. Furthermore, introducing active immune cells with a specific target to the vicinity of the tumor using ACT is proving to be more beneficial at the current time. Accordingly, CAR T cells, as well as vaccines and oncolytic viruses show promising early-stage results. However, there remains a considerable knowledge gap regarding the immune microenvironment of DMG, hampering the development of successful strategies for patients presently fighting DMG. Future work focused on elucidating the underpinnings of the cold immunological response in DMG is desperately necessary, as well as investigations to reveal the potential expression of other (targetable) immune checkpoints. The role H3K27M plays in immunosuppression, and the potential for immunopeptidomics studies using biopsy samples may arm us with novel CAR T-cell therapies that show greater efficacy and specificity. Finally, assessing what roles the various combinations of driver and passenger mutations (including germline) play in the DMG-immune axis is critical. These data will provide us with the potential to co-target these mutations in combination with immunotherapies, to improve response rates, and to better inform which patients will benefit from these sophisticated regimens. Harnessing this information in the development of combination treatment modalities is necessary if we are to improve the likelihood of achieving long-term patient survival for children and young adults diagnosed with DMG.</p>
<p><span class="button"><a href="https://doi.org/10.1093/neuonc/noac117" target="_blank" rel="noopener">Full-Text Study</a></span></p> https://thecurestartsnow.org/news/research-update-the-intrinsic-and-microenvironmental-features-of-diffuse-midline-glioma-implications-for-the-development-of-effective-immunotherapeutic-treatment-strategies/ Wed, 21 Sep 2022 10:27:17 -0500 https://thecurestartsnow.org/11939 Research Update: Serial H3K27M cell-free tumor DNA (cf-tDNA) tracking predicts ONC201 treatment response and progression in diffuse midline glioma <p><em>The following study was funded in part by the DIPG/DMG Collaborative and The Cure Starts Now:</em></p>
<h4 class="article-title">Abstract</h4>
<p>Diffuse Midline Glioma (DMG) with the H3K27M mutation is a lethal childhood brain cancer, with patients rarely surviving 2 years from diagnosis.</p>
<h4 class="article-title">Methods</h4>
<p>We conducted a multi-site Phase 1 trial of the imipridone ONC201 for children with H3K27M-mutant glioma (NCT03416530). Patients enrolled on Arm D of the trial (<em>n</em><span> = 24) underwent serial lumbar puncture for cell-free tumor DNA (cf-tDNA) analysis and patients on all arms at the University of Michigan underwent serial plasma collection. We performed digital droplet polymerase chain reaction (ddPCR) analysis of cf-tDNA samples and compared variant allele fraction (VAF) to radiographic change (maximal 2D tumor area on MRI).</span></p>
<h4 class="article-title">Results</h4>
<p>Change in H3.3K27M VAF over time (“VAF delta”) correlated with prolonged PFS in both CSF and plasma samples. Nonrecurrent patients that had a decrease in CSF VAF displayed a longer progression free survival (<em>P</em><span> = .0042). Decrease in plasma VAF displayed a similar trend (</span><em>P</em><span> = .085). VAF “spikes” (increase of at least 25%) preceded tumor progression in 8/16 cases (50%) in plasma and 5/11 cases (45.4%) in CSF. In individual cases, early reduction in H3K27M VAF predicted long-term clinical response (>1 year) to ONC201, and did not increase in cases of later-defined pseudo-progression.</span></p>
<h4 class="article-title">Conclusions</h4>
<p>Our work demonstrates the feasibility and potential utility of serial cf-tDNA in both plasma and CSF of DMG patients to supplement radiographic monitoring. Patterns of change in H3K27M VAF over time demonstrate clinical utility in terms of predicting progression and sustained response and possible differentiation of pseudo-progression and pseudo-response.</p>
<p><span class="button"><a href="https://doi.org/10.1093/neuonc/noac030" target="_blank" rel="noopener">Full-Text Study</a></span></p> https://thecurestartsnow.org/news/research-update-serial-h3k27m-cell-free-tumor-dna-cf-tdna-tracking-predicts-onc201-treatment-response-and-progression-in-diffuse-midline-glioma/ Wed, 17 Aug 2022 10:31:19 -0500 https://thecurestartsnow.org/11785 Research Update: Dual IGF1R/IR inhibitors in combination with GD2-CAR T-cells display a potent anti-tumor activity in diffuse midline glioma H3K27M-mutant <h4 class="article-title">Background</h4>
<p>Diffuse midline gliomas (DMG) H3K27M-mutant, including diffuse intrinsic pontine glioma (DIPG), are pediatric brain tumors associated with grim prognosis. Although GD2-CAR T-cells demonstrated significant anti-tumor activity against DMG H3K27M-mutant in vivo, a multimodal approach may be needed to more effectively treat patients. We investigated GD2 expression in DMG/DIPG and other pediatric high-grade gliomas (pHGG) and sought to identify chemical compounds that would enhance GD2-CAR T-cell anti-tumor efficacy.</p>
<h4 class="article-title">Study Abstract</h4>
<p>Techniques for analysis of tissues, such as immunofluorescence, immunohistochemistry and flow cytometry-based approaches for analysis of cell suspensions, have allowed the characterization of single cells within heterogeneous cell populations. However, the limitations in the number of parameters that can be simultaneously assessed have hampered advances in understanding complex tissue systems. The advent of single-cell mass cytometry, cytometry by time of flight (CyTOF), which uses metal-tagged antibodies, has made it possible to overcome these constraints as CyTOF allows the detection of a large number of cell markers in parallel. A more recently developed technique, imaging mass cytometry (IMC), has pushed the boundaries even further. By combining the transformational power of mass spectrometry with tissue-based approaches, the IMC allows for high-dimensional analysis of tissues with spatial resolution. However, different challenges must be faced to fully exploit the capabilities of IMC. Here, we provide an overview of IMC, covering the basic principles of the technology, the types of tissues used, marker selection, and antibody panel design. This technical discussion is followed by specific examples of applications of IMC to breast cancer tissues, paediatric brain tumours, and paraneoplastic cerebellar degeneration with a focus on our own research. Computational tools used to analyze the resulting multi-parametric data are also addressed.</p>
<h4 class="article-title">Methods</h4>
<p>Immunohistochemistry in tumor tissue samples and immunofluorescence in primary patient-derived cell lines were performed to study GD2 expression. We developed a high-throughput cell-based assay to screen 42 kinase inhibitors in combination with GD2-CAR T-cells. Cell viability, western blots, flow-cytometry, real time PCR experiments, DIPG 3D culture models, and orthotopic xenograft model were applied to investigate the effect of selected compounds on DIPG cell death and CAR T-cell function.</p>
<h4 class="article-title">Results</h4>
<p>GD2 was heterogeneously, but widely, expressed in the tissue tested, while its expression was homo-geneous and restricted to DMG/DIPG H3K27M-mutant cell lines. We identified dual IGF1R/IR antagonists, BMS-754807 and linsitinib, able to inhibit tumor cell viability at concentrations that do not affect CAR T-cells. Linsitinib, but not BMS-754807, decreases activation/exhaustion of GD2-CAR T-cells and increases their central memory profile. The enhanced anti-tumor activity of linsitinib/GD2-CAR T-cell combination was confirmed in DIPG models in vitro, ex vivo, and in vivo.</p>
<h4 class="article-title">Conclusion</h4>
<p>Our study supports the development of IGF1R/IR inhibitors to be used in combination with GD2-CAR T-cells for treating patients affected by DMG/DIPG and, potentially, by pHGG.</p>
<p><span class="button"><a rel="noopener" href="https://doi.org/10.1093/neuonc/noab300" target="_blank">Full-Text Study</a></span></p> https://thecurestartsnow.org/news/research-update-dual-igf1rir-inhibitors-in-combination-with-gd2-car-t-cells-display-a-potent-anti-tumor-activity-in-diffuse-midline-glioma-h3k27m-mutant/ Wed, 27 Jul 2022 12:11:42 -0500 https://thecurestartsnow.org/11720 Research Update: Use of Imaging Mass Cytometry in Studies of the Tissue Microenvironment <p><em>In 2019 Dr. Mara Vinci of Bambino Gesu Children's Hospital proposed an study demonstrating using imaging mass cytometry to identify next generation imaging biomarkers in PHGG and DIPG. <a href="/research/research-and-grants/bambino-gesu-childrens-hospital-2019-08-02/" title="Bambino Gesu Children's Hospital: 2019-08-02">This project was approved for funding</a> by the The Cure Starts Now and here are the results:</em></p>
<h4 class="article-title">Lay Summary of Proposal</h4>
<p><span>The field of pediatric neuro-oncology has been greatly advanced by recent studies, which have better outlined the spectrum of pediatric Central Nervous System (CNS) tumors, into more clearly distinct biological and clinico-pathological tumor entities.</span></p>
<p><span>Unfortunately, what is still missing, is the consideration of the tumor as a whole, with and within its ecosystem. We and others have largely contributed to highlight the heterogeneity of pediatric CNS tumors. In particular, by using patient derived primary cell lines, we have shown that cancer cells are able to work together as a network and even rare subpopulations are critical for this network to function. What we have not yet been able to do is to map this evidence into the patient tumor tissue, taking into account all the elements of the tumor microenvironment. Why is this so important?</span></p>
<p><span>Imagine to have special lenses that would allow you to navigate through the tumor tissue sample, being able to identify the tumor cells, their different heterogeneous subpopulations, their relationships with normal brain cells and their functional states, at the same time identifying the different types of immune cells and all the components of the Blood Brain Barrier (BBB).</span></p>
<p><span>Our project aims at applying a novel, state of the art technology, called Imaging Mass Cytometry (IMC), that, coupled with computational analysis, will enable us to identify novel and much needed clinically relevant imaging biomarkers. In IMC, tissue slices are stained with special antibodies that differently from the standard ones, are not linked to a fluorescent protein but to a metal. Once the tissue is stained, it can be processed in a special instrument, where selected areas of interest are scanned by a laser and the metal-coniugated antibodies,  are released. The physical and chemical properties of those antibodies allows the exceptional simultaneous staining with up to 40 antibodies for each experiment. They can be quantified so that expression and abundance of all the markers is provided without losing information regarding their spatial distribution.</span></p>
<p><span>In this proposal we will focus on a group of highly aggressive and heterogeneous pediatric CNS tumors, which include pediatric High-Grade Glioma (pHGG) and Diffuse Intrinsic Pontine Glioma (DIPG), with a very poor outcome and no effective treatment so far.</span></p>
<p><span>We will employ a platform with a large panel of specific tumor and brain microenvironment antibodies that will be used to stain biopsy, resection and autopsy samples, including samples collected from different regions and at different time points of tumor progression. When used simultaneously on the same tissue section, it will enable us to identify at the same time all the different components of the tumor ecosystem, allowing us, for the first time, to fully read through tumor tissue samples from pHGG and DIPG, identifying unique diagnostic and prognostic biomarkers in those aggressive pediatric cancers.</span></p>
<h4 class="article-title">Study Abstract</h4>
<p><span>Techniques for analysis of tissues, such as immunofluorescence, immunohistochemistry and flow cytometry-based approaches for analysis of cell suspensions, have allowed the characterization of single cells within heterogeneous cell populations. However, the limitations in the number of parameters that can be simultaneously assessed have hampered advances in understanding complex tissue systems. The advent of single-cell mass cytometry, cytometry by time of flight (CyTOF), which uses metal-tagged antibodies, has made it possible to overcome these constraints as CyTOF allows the detection of a large number of cell markers in parallel. A more recently developed technique, imaging mass cytometry (IMC), has pushed the boundaries even further. By combining the transformational power of mass spectrometry with tissue-based approaches, the IMC allows for high-dimensional analysis of tissues with spatial resolution. However, different challenges must be faced to fully exploit the capabilities of IMC. Here, we provide an overview of IMC, covering the basic principles of the technology, the types of tissues used, marker selection, and antibody panel design. This technical discussion is followed by specific examples of applications of IMC to breast cancer tissues, paediatric brain tumours, and paraneoplastic cerebellar degeneration with a focus on our own research. Computational tools used to analyze the resulting multi-parametric data are also addressed.</span></p>
<h4 class="article-title">Study Conclusions</h4>
<p>Imaging mass cytometry has incredible potential to revolutionize the way many biological questions are approached and to have a lasting impact in many fields of biology where spatial analysis is relevant including some areas where it has not seen a lot of use so far. Yet, even with all its potential, IMC can be made much more powerful if it were integrated as part of an ecosystem of analysis methods to produce multi-modal datasets.</p>
<p>One of the biggest limitations of IMC is its slow speed of acquisition. A full histological slide can take up to 4 days to image, thus limiting the application of this technique to large-scale studies unless small samples or core biopsies are used. A potential solution to this issue is to use different technologies to pre-screen large libraries of sections and prioritize regions of interest for highly multiplexed imaging. The last decade has seen the appearance of a variety of microscopy techniques (including light sheet microscopy, serial two-photon tomography, and others) capable of imaging whole organs in a matter of hours or days. In parallel, whole-slide scanners have reached a speed sufficient to image hundreds of slides at a time. If some limited combination of markers (IHC antibodies and/or histological stainings) could be used to identify regions of interest with the help of a pathologist or, in the future, automated artificial intelligence classification tools, only a fraction of the sample would need to be routed to IMC for deep analysis, allowing studies to leverage the power of this technology on much wider and more relevant sample sets. An obvious caveat here is that, the smaller the sub-section selected for analysis, the higher the risk to interrogate just a fraction of the tissue heterogeneity present in the sample. Before any pre-selection strategy is used, a series of studies should be conducted to verify at which spatial scales (i.e. cellular, microscopic, or macroscopic) the heterogeneity is present and biologically relevant. Financial considerations should also be included.</p>
<p>Another limitation of mass cytometry is that the number of markers that can be multiplexed, even though much higher than previously possible, is still somewhat limited. In comparison, some of the genomics techniques that have recently become available allow the detection and quantification of hundreds, or even thousands, of different genes in single cells, both post-dissociation (DROP-Seq, 10X Chromium, CEL-seq) and in situ (merFISH, seqFISH, spatial transcriptomics, Slide-Seq). In some cases, hundreds of antibodies can be detected together with RNA transcripts on disaggregated cells (CITE-Seq). Although the sample types used by these techniques are sometimes different from those compatible with the IMC, it should be possible (and it is indeed being done in some of our laboratories) to design a study to perform IMC and other spatial ‘omics measurements at the same time. Provided that the methods overlap by a significant number of markers, it should be possible to integrate these datasets and assign the cells detected by IMC to one of the cell types or states identified by the other methods, effectively leveraging different technologies to produce a coherent model with the potential to be biologically informative. Techniques such as CITE-seq and single-cell RNA-seq will be good starting points to define protein markers unique, or specific, to certain cell classes, which can then be optimized and included in IMC panels.</p>
<p></p>
<p><span><span class="button"><a href="https://doi.org/10.1007/978-3-030-98950-7_20" target="_blank" rel="noopener">Full-Text Study</a></span></span></p> https://thecurestartsnow.org/news/research-update-use-of-imaging-mass-cytometry-in-studies-of-the-tissue-microenvironment/ Tue, 19 Jul 2022 08:47:37 -0500 https://thecurestartsnow.org/11648 Research Update: Therapeutic targeting of prenatal pontine ID1 signaling in diffuse midline glioma <p><em>In 2019 Dr. Carl Koschmann of University of Michigan Hospitals proposed an study demonstrating the <span>Therapeutic targeting of prenatal pontine ID1 signaling in diffuse midline glioma</span>. <a href="/research/research-and-grants/university-of-michigan-hospitals-2019-11-05/" title="University of Michigan Hospitals: 2019-11-05">This project was approved for funding</a> by the DIPG/DMG Collaborative and The Cure Starts Now and here are the results:</em></p>
<h4 class="article-title">Abstract</h4>
<p><span>Diffuse midline gliomas (DMG) are highly invasive brain tumors with rare survival beyond two years past diagnosis and limited understanding of the mechanism behind tumor invasion. Previous reports demonstrate upregulation of the protein ID1 with H3K27M and </span><em>ACVR1</em><span> mutations in DMG, but this has not been confirmed in human tumors or therapeutically targeted.</span></p>
<h4 class="article-title">Methods</h4>
<p><span>Whole exome, RNA, and ChIP-sequencing was performed on the ID1 locus in DMG tissue. Scratch-assay migration and transwell invasion assays of cultured cells were performed following shRNA-mediated ID1-knockdown. In vitro and in vivo genetic and pharmacologic [cannabidiol (CBD)] inhibition of ID1 on DMG tumor growth was assessed. Patient-reported CBD dosing information was collected.</span></p>
<h4 class="article-title">Results</h4>
<p><span>Increased ID1 expression in human DMG and in utero electroporation (IUE) murine tumors is associated with H3K27M mutation and brainstem location. ChIP-sequencing indicates ID1 regulatory regions are epigenetically active in human H3K27M-DMG tumors and prenatal pontine cells. Higher ID1-expressing astrocyte-like DMG cells share a transcriptional program with oligo/astrocyte-precursor cells (OAPCs) from the developing human brain and demonstrate upregulation of the migration regulatory protein SPARCL1. Genetic and pharmacologic (CBD) suppression of ID1 decreases tumor cell invasion/migration and tumor growth in H3.3/H3.1K27M PPK-IUE and human DIPGXIIIP* in vivo models of pHGG. The effect of CBD on cell proliferation appears to be non-ID1 mediated. Finally, we collected patient-reported CBD treatment data, finding that a clinical trial to standardize dosing may be beneficial.</span></p>
<h4 class="article-title">Conclusions</h4>
<p><span>H3K27M-mediated re-activation of ID1 in DMG results in a SPARCL1+ migratory transcriptional program that is therapeutically targetable with CBD.</span></p>
<p><span><span class="button"><a href="https://doi.org/10.1093/neuonc/noac141" target="_blank" rel="noopener">Full-Text Study</a></span></span></p>
<p><span></span></p>

<div class="embed-container"><iframe src="https://www.youtube.com/embed/qPBi9WF4EiU" frameborder="0" allowfullscreen=""></iframe></div> https://thecurestartsnow.org/news/research-update-therapeutic-targeting-of-prenatal-pontine-id1-signaling-in-diffuse-midline-glioma/ Wed, 29 Jun 2022 13:48:57 -0500 https://thecurestartsnow.org/11609 Zips Esports at The University of Akron partners with The Cure Starts Now to “Nerf” Cancer! <p><strong>Akron, OH</strong><strong> | April, 2022 –</strong> The University of Akron’s Zips Esports program has partnered with Ohio-based charity, The Cure Starts Now, to host a fundraising event for video gamers to raise money for pediatric brain cancer research.</p>
<p>During the 8-hour gaming fundraiser, participating University of Akron students will have the opportunity to play video games throughout the day and fundraise for a crucial cause. The funds raised will benefit pediatric brain cancer research through The Cure Starts Now’s “Nerf Cancer” campaign.</p>
<p>The Cure Starts Now’s <a href="/who-we-are/mission/">mission</a> is to find the Homerun Cure™ for all cancers by researching treatment for the most aggressive and deadly type of pediatric brain cancers. To date, The Cure Starts Now has funded over $18 million in cancer research, resulting in over 115 cutting-edge research grants in 15 countries since 2007.</p>
<p><img alt="Clare" src="/media/2141/ronnebaum_clare.jpg" style="float: left; padding: 0 20px 20px 0; max-width: 350px;"></p>
<p>Events like Zips Esports Nerf Cancer Gaming Fundraiser are critical for warriors like Clare Ronnebaum who lives near Cleveland, Ohio. Clare suffers from DIPG, an inoperable pediatric brain tumor that has no cure at this time.  She is being treated at Cincinnati Children's Hospital, where she recently completed a clinical trial fully funded by The Cure Starts Now.  According to <a href="https://dipg.org/dipg-facts/dipg-survival-rate-and-prognosis/">dipg.org</a>, the 5-year survival rate for DIPG patients is 2%. Thanks in part to donations received by The Cure Starts Now to help fund the much-needed research, Clare and her family will be celebrating 4 years post diagnosis in June of this year.</p>
<p>The University of Akron is one of the first 50 universities in the country to compete at a varsity level and also offers a club and recreational gaming programs. As one of the first Division I schools to form a varsity esports program, The University of Akron has several Esports varsity teams for popular games such as Fornite, Valorant, League of Legends, and Rocket League. UA was recently ranked as one of the top collegiate Esports programs by both BestColleges.com and 89.5 The Sports Hub.</p>
<blockquote>
<p>"UA has a great history of supporting charitable causes. Knowing that Zips Esports is home to one of the largest collegiate esports facilities in the world, it only seemed natural to partner with them for our Nerf Cancer campaign. Leveraging video gamers to help fundraise for cancer research and spread awareness of our cause is what Nerf Cancer is all about." – Mike Weiner, CIO, The Cure Starts Now</p>
</blockquote>
<p>The Zips Esports Nerf Cancer Gaming Fundraiser will take place on <strong>Friday</strong> <strong>April 22, 2022 from 3-11pm</strong> at the Zips Esports Union Facility. The event is <strong>FREE TO JOIN</strong> and will include free food, prizes for top fundraisers, and other giveaways. Participants must RSVP at <a href="https://nerfcancer.org/ZipsEsports">nerfcancer.org/ZipsEsports</a></p>
<p style="margin-bottom: 0;">To learn more about:</p>
<ul>
<li style="margin-bottom: 0;">Nerf Cancer visit <a href="https://nerfcancer.org/">www.nerfcancer.org</a></li>
<li style="margin-bottom: 0;">The Cure Starts Now visit <a href="http://www.thecurestartsnow.org">www.thecurestartsnow.org</a></li>
<li style="margin-bottom: 0;">University of Akron Esports visit <a href="http://www.uakron.edu/esports/">www.uakron.edu/esports/</a></li>
</ul>
<hr>
<p><em>The Cure Starts Now was started in honor of 6-year-old Elena Desserich, a Cincinnati girl who battled a rare, aggressive form of brain cancer known as DIPG. Today, The Cure Starts Now Foundation has over 40 locations in three countries and is the only cancer foundation dedicated to finding the Homerun Cure™ for cancer by focusing on one of the rarest, most aggressive forms of cancer. Believing in more than just awareness, The Cure Starts Now has funded over $18 million in cancer research in partnership with the DIPG Collaborative. This includes 115+ cutting-edge research grants at over 100 hospitals in 15 countries since 2007. Learn more about The Cure Starts Now and their mission to find the Homerun Cure™ for cancer at <a href="http://www.thecurestartsnow.org">www.thecurestartsnow.org</a>, and follow <a href="http://www.facebook.com/TheCureStartsNow/">www.facebook.com/TheCureStartsNow/</a> for updates.</em></p> https://thecurestartsnow.org/news/zips-esports-at-the-university-of-akron-partners-with-the-cure-starts-now-to-nerf-cancer/ Wed, 13 Apr 2022 10:12:03 -0500 https://thecurestartsnow.org/11321 9th Annual Sydney's Band of Gold Golf Tournament Aims to Raise Funds for Pediatric Brain Cancer Research <p><em>The North Texas Chapter of The Cure Starts Now has raised over $1.4 million since inception!</em></p>
<p><strong>Grapevine, TX | April 6, 2022 </strong>– The North Texas Chapter of The Cure Starts Now is hosting it’s 9<sup>th</sup> Annual Sydney’s Band of Gold Golf Tournament in honor or Sydney Bjornberg, a little girl who battled DIPG (Diffuse Intrinsic Pontine Glioma), a brain tumor that is highly aggressive and difficult to treat.  The golf outing is being held on April 11, 2022 at the Cowboys Golf Club, the first and only NFL-themed golf club in the world.</p>
<blockquote>
<p>“Sydney loved to run, swim, jump on the trampoline, ride her bike and ski, amongst many other things. To say she loved being active is an understatement. She wanted to bring hope and joy to all children battling cancer and the reason we continue to fight to find a cure. We believe with all our hearts that if we come together we CAN and WILL make a difference.” -Michelle Bjornberg, Sydney’s mother</p>
</blockquote>
<p>Sydney was one week shy of her 5<sup>th</sup> grade graduation when she was diagnosed with DIPG in May of 2012. She never complained after her diagnosis, and wanted to know that there was hope and wanted to believe that if she did what was asked of her that she would get better.  She would often times be seen giving her jewelry or stuff animals to other children with cancer during her visits because she wanted to bring a smile to their faces during their difficult time.  Sydney tried to focus on the things that she could control and could do instead of the things DIPG slowly took from her.  Unfortunately, Sydney lost her battle with DIPG in June of 2013.</p>
<p>The goal for the golf outing is to raise funds for pediatric brain cancer research in the hopes that one day when a family hears the words “Your child has cancer” or even worse “Your child has DIPG” that they will not just have hope to survive for a few extra months after enduring harsh treatments and instead have a cure!  According to <a href="https://dipg.org/dipg-facts/what-is-dipg/">dipg.org</a>, the 5-year survival rate for DIPG patients is 2%. Believing in more than just awareness, The Cure Starts Now has funded over $18 million in cancer research, resulting in over 115 cutting edge research grants in 15 countries since 2007.</p>
<p>To learn more:</p>
<ul>
<li>Band of Gold Golf Tournament visit <a href="https://events.thecurestartsnow.org/sydneys-band-of-gold-golf-tournament/" title="Sydney's Band of Gold Golf Tournament">https://events.thecurestartsnow.org/sydneys-band-of-gold-golf-tournament/</a></li>
<li>The Cure Starts Now visit <a href="/" title="thecurestartsnow.org">www.thecurestartsnow.org</a></li>
</ul>
<hr>
<p><em>The Cure Starts Now was started in honor of 6-year-old Elena Desserich, a Cincinnati girl who battled a rare, aggressive form of brain cancer known as DIPG. Today, The Cure Starts Now Foundation has over 40 locations in three countries and is the only cancer foundation dedicated to finding the Homerun Cure™ for cancer by focusing on one of the rarest, most aggressive forms of cancer. Believing in more than just awareness, The Cure Starts Now has funded over $18 million in cancer research, resulting in over 150 cutting edge research grants in 15 countries since 2007.</em></p> https://thecurestartsnow.org/news/9th-annual-sydneys-band-of-gold-golf-tournament-aims-to-raise-funds-for-pediatric-brain-cancer-research/ Wed, 06 Apr 2022 13:44:50 -0500 https://thecurestartsnow.org/11288 Characteristics of patients ≥10 years of age with diffuse intrinsic pontine glioma: a report from the International DIPG/DMG Registry <p><em>As a supplement to the Journal of Clinical Oncology 2018 publishing from the <a href="https://dipgregistry.org" target="_blank" rel="noopener">International DIPG/DMG Registry</a> and statistics of DIPG and DMG, the International DIPG/DMG Registry releases new age specific findings and long-term survival prognosis.</em></p>
<div class=" sec">
<div class="title"><strong>Background</strong></div>
<p class="chapter-para">Diffuse intrinsic pontine gliomas (<a href="https://www.dipg.org/facts/what-is-dipg/" title="What is DIPG">DIPG</a>) generally occur in young school-age children, although can occur in adolescents and young adults. The purpose of this study was to describe clinical, radiological, pathologic, and molecular characteristics in patients ≥10 years of age with DIPG enrolled in the International DIPG Registry (IDIPGR).</p>
</div>
<div class=" sec">
<div class="title"><strong>Methods</strong></div>
<p class="chapter-para">Patients ≥10 years of age at diagnosis enrolled in the IDIPGR with imaging confirmed DIPG diagnosis were included. The primary outcome was overall survival (OS) categorized as long-term survivors (LTS) (≥24 months) or short-term survivors (STS) (<24 months).</p>
</div>
<div class=" sec">
<div class="title"><strong>Results</strong></div>
<p class="chapter-para">Among 1010 patients, 208 (21%) were ≥10 years of age at diagnosis; 152 were eligible with a median age of 12 years (range 10-26.8). Median OS was 13 (2-82) months. The 1-, 3-, and 5-year OS was 59.2%, 5.3%, and 3.3%, respectively. The 18/152 (11.8%) LTS were more likely to be older (<em>P</em><span> </span>< .01) and present with longer symptom duration (<em>P</em><span> </span>< .01). Biopsy and/or autopsy were performed in 50 (33%) patients; 77%, 61%, 33%, and 6% of patients tested had H3K27M (<em>H3F3A</em><span> </span>or<span> </span><em>HIST1H3B</em>),<span> </span><em>TP53</em>,<span> </span><em>ATRX</em>, and<span> </span><em>ACVR1</em><span> </span>mutations/genome alterations, respectively. Two of 18 patients with IDH1 testing were<span> </span><em>IDH1</em>-mutant and 1 was a LTS. The presence or absence of H3 alterations did not affect survival.</p>
</div>
<div class=" sec">
<div class="title"><strong>Conclusion</strong></div>
<p class="chapter-para">Patients ≥10 years old with DIPG have a median survival of 13 months. LTS present with longer symptom duration and are likely to be older at presentation compared to STS.<span> </span><em>ATRX</em><span> </span>mutation rates were higher in this population than the general DIPG population.</p>
</div>
<p><span class="button"><a href="https://doi.org/10.1093/neuonc/noab140" target="_blank" rel="noopener">Full-Text Study</a></span></p> https://thecurestartsnow.org/news/characteristics-of-patients-10-years-of-age-with-diffuse-intrinsic-pontine-glioma-a-report-from-the-international-dipgdmg-registry/ Thu, 17 Feb 2022 14:38:00 -0500 https://thecurestartsnow.org/11069 Social community giant, The Dad, has partnered with The Cure Starts Now to “nerf” cancer! <p><strong>Cincinnati, OH</strong><strong> | February 10, 2022 –</strong> <strong>The Dad</strong> has partnered with The Cure Starts Now as the premier sponsor of “<a href="https://events.thecurestartsnow.org/nerf-cancer-hearts-for-heroes/" title="Nerf Cancer Hearts for Heroes">Hearts for Heroes</a>,” a fundraising event for streamers to raise money for pediatric brain cancer research.</p>
<p>During Hearts for Heroes, each streamer will be matched with a young Hero who is fighting brain cancer.  The funds raised will benefit cancer research in honor of the Hero.  The Cure Starts Now will compile all donor messages onto hand-written valentines that will be mailed to the Hero in the hopes of bringing a big smile to their little faces! Hearts for Heroes is part of a larger campaign, Nerf Cancer, which has the same underlying purpose – to cure cancer through streaming video games.</p>
<figure style="float: left !important;"><img alt="" src="/media/4605/lj-gaming-edited.jpg" style="width: 200px; height: auto;"></figure>
<p><strong>The Dad</strong> has been matched with Hero LJ who is currently fighting DIPG (Diffuse Intrinsic Pontine Glioma).  LJ is an energetic 6-year-old boy who loves super heroes and playing video games, like Minecraft. According to <a href="https://dipg.org/dipg-facts/what-is-dipg/">dipg.org</a>, the 5-year survival rate for DIPG patients is 2%. Thanks in part to a radical and promising phase 2 clinical trial funded by The Cure Starts Now, LJ will be 4 years post-diagnosis by mid-February.  Believing in more than just awareness, The Cure Starts Now has funded over $18 million in cancer research, resulting in over 115 cutting edge research grants in 15 countries since 2007.</p>
<blockquote style="border: 0;">
<p><em>"LJ is an absolute warrior. His strength and character inspire me every day. And above all else: I've never seen anyone build cooler Minecraft fortresses. Impenetrable! LJ is my hero." – Joel Willis, Editor in Chief, <strong>The Dad</strong></em></p>
</blockquote>
<p><strong>The Dad</strong> has hit the ground running by kicking off an initial fundraising stream featuring the New England Patriots’ Cody Davis and J.J. Taylor, and content creator SSG Neato. Their Rocket League community stream raised over triple their original fundraising goal and <strong>The Dad</strong> will continue fundraising through next week.</p>
<figure><img alt="The Dad Gaming" src="/media/4591/thedadgaming-logo-dark.png" style="max-width: 200px;"></figure>
<p><strong>The Dad</strong> is one of the largest and most engaging parenting brands in the world. They create funny, sentimental, helpful, and inspiring content that reaches millions of people every day. Their mission is to create an inclusive community that celebrates modern involved fatherhood and literally changes the perception of dads in a positive way.</p>
<p>In 2019, <strong>The Dad</strong> created a place for members of their community to get together to talk about gaming, parenting, and parenting while gaming. Through very careful moderation, they’ve grown it into one of the most positive, non-toxic gaming communities on the internet. What started as a handful of dads playing custom Fortnite matches has grown into a multi-channel e-Sports empire, complete with leagues, events, and sponsored tournaments.</p>
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<p><em>"We started <strong>The Dad</strong> Gaming as a way for parents and families to bond and connect over video games. We love celebrating the positive aspects of gaming. So, if we can use gaming to support the heroes out there fighting pediatric cancer, we're going to squad up every time! <strong>The Dad</strong> Gaming team will do anything we can to level up in the battle against pediatric cancer." </em><em>– </em><em>Joel Willis</em><em>, </em><em>Editor in Chief</em><em>, </em><strong><em>The Dad</em></strong></p>
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<p>To send along your own Valentine’s message to LJ, make a donation to <strong>The Dad</strong>’s fundraiser at <a href="https://nerfcancer.org/TheDad">https://nerfcancer.org/TheDad</a>.</p>
<p>To learn more:<br><strong>The Dad</strong> Gaming visit <a href="https://www.thedad.com/category/gaming/">www.thedad.com/category/gaming/</a><br>Nerf Cancer visit <a href="https://nerfcancer.org/">www.nerfcancer.org</a><br>The Cure Starts Now visit <a href="http://www.thecurestartsnow.org">www.thecurestartsnow.org</a></p>
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<p><small>The Cure Starts Now was started in honor of 6-year-old Elena Desserich, a Cincinnati girl who battled a rare, aggressive form of brain cancer known as DIPG. Today, The Cure Starts Now Foundation has over 40 locations in three countries and is the only cancer foundation dedicated to finding the Homerun Cure™ for cancer by focusing on one of the rarest, most aggressive forms of cancer. Believing in more than just awareness, The Cure Starts Now has funded over $18 million in cancer research in partnership with the DIPG Collaborative. This includes 115+ cutting-edge research grants at over 100 hospitals in 15 countries since 2007. Learn more about The Cure Starts Now and their mission to find the Homerun Cure™ for cancer at <a href="http://www.thecurestartsnow.org">www.thecurestartsnow.org</a>, and follow <a href="http://www.facebook.com/TheCureStartsNow/">www.facebook.com/TheCureStartsNow/</a> for updates.</small></p> https://thecurestartsnow.org/news/social-community-giant-the-dad-has-partnered-with-the-cure-starts-now-to-nerf-cancer/ Thu, 10 Feb 2022 11:30:31 -0500 https://thecurestartsnow.org/11038 Canada Based Non-Profit Selected to be the Newest International Chapter of The Cure Starts Now <p>The Cure Starts Now Canada is the newest international chapter in honor of their son, Liam with whom they lost to DIPG (Diffuse Intrinsic Pontine Glioma)</p>
<p>Victoria, British Columbia  February 2022­­ – The Cure Starts Now is expanding its international presence into Canada.  With chapters that extend across the United States and Australia it was important for us to build a partnership and friendship with our northern neighbor.  The Cure Starts Now Canada was formed in honor of 3-year-old little Liam Comboye who battle DIPG, an aggressive form of brain cancer.  Liam has become a household name and has become the DIPG Warrior face to all of Canada.</p>
<blockquote>
<p>“The Cure Starts Now has been built by families, like the Comboye’s, who are determined to change the outcome for families facing the same diagnosis despite their own inexplicable loss. We can’t be more honored to stand beside them to continue Liam’s legacy,” said Brooke Desserich, Co-Founder for The Cure Starts Now.</p>
</blockquote>
<p>Liam was his parents first born child. He was kind, had a heart of gold, and always tried to help others.  Liam was very Intelligent, and at the age of 18 months could sing his ABC's and match letters with names and pictures. His love for learning new things was so exciting.  He had an engineering mind and could construct anything out of his building toys. Liam was incredibly passionate about everything he did.</p>
<figure><img alt="" src="/media/4599/comboye-family.jpeg"><br>
<figcaption></figcaption>
</figure>
<p>Whenever anyone would ask Liam what he wanted to do when he grew up, he always had a simple answer – help others.  He inspired Cari and her sister Lindsay Walper (Liam’s Auntie), to form The Cure Starts Now Canada after his passing to continue his legacy of helping others. His whole family is determined to fight and help fund research to find a cure to end all cancers, starting with DIPG, the biggest bully.</p>
<p>Liam had a beautiful soul full of music, drawn particularly to country songs with messages beyond his years.  Music oozed from every fiber of his being.  He’d sing and dance feeling every instrument and word contained within.  It was like each song was born inside him.  We have felt strongly Liam’s musical being left us with messages from a much older and wiser Liam, years down the road.  Liam’s innate love of music allowed us to have so many beautiful lasting memories!</p>
<blockquote>
<p>“For me, it’s about taking the grief and trying to cope by doing something Liam would have wanted and by doing so we will honor his life and keep his memory alive,” Cari said. “We want to help make a difference and have a positive impact on the future of other children and families facing this horrible diagnosis.” – Cari Comboye, Liam’s mother and Co-Founder of The Cure Starts Now Canada</p>
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<p>To learn more:<br>The Cure Starts Now Canada visit <a href="http://www.thecurestartsnow.ca">www.thecurestartsnow.ca</a><br>The Cure Starts Now visit <a href="http://www.thecurestartsnow.org">www.thecurestartsnow.org</a></p>
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<p><small>The Cure Starts Now Canada was started in honor of Liam Comboye, a boy from Sooke, British Columbia who battled a rare, aggressive form of brain cancer known as DIPG. The Cure Starts Now Canada is the second international chapter of The Cure Starts Now and is family to 40 other chapters worldwide. The Cure Starts Now is the only cancer foundation dedicated to finding the Homerun Cure™ for cancer by focusing on one of the rarest, most aggressive forms of cancer. Believing in more than just awareness, The Cure Starts Now has funded over $18 million in cancer research, resulting in over 150 cutting edge research grants in 15 countries since 2007.</small></p> https://thecurestartsnow.org/news/canada-based-non-profit-selected-to-be-the-newest-international-chapter-of-the-cure-starts-now/ Mon, 07 Feb 2022 09:25:56 -0500 https://thecurestartsnow.org/11026 Compassionate Use, Expanded Access, and Off-Trial Use of Treatments for Brain Tumors <p>When confronting a brain tumor diagnosis, clinical trials are often the first resort beyond or concurrent with radiation for treatment options.  Although these trials may not offer a cure, phase 2 and phase 3 trials do offer a limited measure of comfort from life-threatening side effects.  But if these options don’t work, many patients find themselves weighing other options including phase 1 trials or even compassionate use opportunities where little to nothing may be known about the compound being tried.  When this happens, there are several pathways to consider, from standard compassionate access to expanded access and even off-trial usage of drugs.  Below we’ll explore some of the key differences between each, the limitations of each pathway and even a provisional pathway that may also develop in the coming years:</p>
<h2>Compassionate Use of Brain Tumor Treatments</h2>
<p>Compassionate use of a therapy or compound is a formal channel recognized by the FDA to grant permission for a specific patient to gain access to an experimental treatment. It is only for serious or life-threatening diseases or conditions for an investigational medical product for which there are no other comparable or satisfactory therapies available.  These therapies have not been formally approved for use by the FDA, but are usually in the investigative stage through other trials.  As with any therapy not formally approved there can be serious side effects, even fatal, and the effectiveness of the therapy isn’t known. </p>
<p>Often the path to compassionate approval can be lengthy and difficult.  In order to gain approval, the patient must accomplish the following:</p>
<ul>
<li>Approval from a Licensed Physician – In any compassionate use case, other than the initial request of the patient, the physician is the most integral to this process. He or she must have explored other treatment options and work with industry, the FDA and an Institutional Review Board (IRB) to gain approval for compassionate use of the therapy.  This is done in writing and may require updates and revisions.  Additionally, the physician must then oversee the administration of the therapy, general care and reporting of responses.</li>
<li>Approval of Industry – In any compassionate use case, the company producing the therapy must also approve of its use in these cases. Additionally, they also may be required to participate in the reporting process.</li>
<li>Approval of an IRB – The IRB’s role is to protect the rights of patients participating in any study. This is accomplished with an approval of the plan of administration of the therapy, the consents and communication with the patient to ensure that they understand the inherent issues of the treatment path.</li>
<li>Approval of the FDA – Lastly, the FDA must also review the request and determine if compassionate access is allowed.</li>
</ul>
<h2>Expanded Access of Brain Tumor Treatments</h2>
<p>The term Expanded Access is often used interchangeably with Compassionate Use, but often is used to refer to multi-patient programs of Compassionate Use. Although many of the approval thresholds still must be upheld, many formal Expanded Access programs effectively recognize a group of patients with the same diagnoses and set certain criteria for those that will be allowed to participate – much like a clinical trial.  In these cases, while the data still needs to be captured for patient safety, it may not be used for ultimate therapy approval with the FDA.  Typically Expanded Access programs are setup where clinical trials are limited, the type of disease is life-threatening and where there may be some foundational and industry support to bear the costs of both the therapy and also the reporting functions.  Expanded Access programs may also be used in cases where drug usage may be approved for one class of patients but not another – often dealing with access to certain age groups such as children when an adult version has approval.</p>
<h2>Off-Trial Usage of Brain Tumor Treatments</h2>
<p>One particular option that isn’t often explored is Off-Trial Usage of a therapy. Here the compound may already have completed a phase 1 or phase 2 trial but the patient may not qualify for an existing trial due to progression, use of another drug or even certain functional limitations.  Sometimes it can also be used when a trial temporarily halts recruitment when it moves between phases.  In these cases, the treating physician may seek approval for an off-trial usage of the compound.  In this case, the approval may be slightly easier than compassionate use because the therapy may already be approved for limited use.  Once again, data may not be collected for drug approval, but will be reviewed for patient safety.  It is important that patients discuss this option with their doctor because often it may be an easier, but overlooked, path to treatment.</p>
<h2>Provisional Use of Brain Tumor Treatments</h2>
<p>While not a current treatment pathway, Provisional Use is a proposed option that is the subject of the <strong>Promising Pathway Act</strong>. Here, advocates seek to recognize a new status with the FDA taking Compassionate Access to a provisional approval for 2 years or less, thus allowing groups of patients to participate and gain access to new therapies that are reasonably believed to be safe.  These patients will then be monitored for safety and the data would be recorded in a third-party registry for future approval processes.  To learn more about this pathway, visit <a href="https://www.congress.gov/bill/117th-congress/senate-bill/1644/text">https://www.congress.gov/bill/117th-congress/senate-bill/1644/text</a>.  To help with the approval of this act, please contact your legislators below:</p>
<p><span class="button"><a class="btn secondary" href="/how-to-help/promising-pathway-act/" title="Promising Pathway Act">Contact Your Legislators</a></span></p>
<p>It is important to note that each of the above pathways do not deal with the financial aspect of participation and often are not covered by normal health insurance.  Still, they seek to open up options for the patients and are of particular significance to those fighting brain cancer.</p> https://thecurestartsnow.org/news/compassionate-use-expanded-access-and-off-trial-use-of-treatments-for-brain-tumors/ Mon, 17 Jan 2022 13:01:23 -0500 https://thecurestartsnow.org/10944 Preclinical and clinical evaluation of German-sourced ONC201 for the treatment of H3K27M-mutant diffuse intrinsic pontine glioma <p><em>In a study funded by The Cure Starts Now and the DIPG/DMG Collaborative, Dr. Dun discusses the initial effects of differing formulations of ONC201.</em></p>
<h4 class="article-title">Background</h4>
<p><span>Diffuse intrinsic pontine glioma (DIPG) is a fatal childhood brainstem tumor for which radiation is the only treatment. Case studies report a clinical response to ONC201 for patients with H3K27M-mutant gliomas. Oncoceutics (ONC201) is only available in the United States and Japan; however, in Germany, DIPG patients can be prescribed and dispensed a locally produced compound—ONC201 German-sourced ONC201 (GsONC201). Pediatric oncologists face the dilemma of supporting the administration of GsONC201 as conjecture surrounds its authenticity. Therefore, we compared GsONC201 to original ONC201 manufactured by Oncoceutics Inc.</span></p>
<h4 class="article-title">Methods</h4>
<p><span>Authenticity of GsONC201 was determined by high-resolution mass spectrometry and nuclear magnetic resonance spectroscopy. Biological activity was shown via assessment of on-target effects, </span><em>in vitro</em><span> growth, proliferation, and apoptosis analysis. Patient-derived xenograft mouse models were used to assess plasma and brain tissue pharmacokinetics, pharmacodynamics, and overall survival (OS). The clinical experience of 28 H3K27M+ mutant DIPG patients who received GsONC201 (2017–2020) was analyzed.</span></p>
<h4 class="article-title">Results</h4>
<p><span>GsONC201 harbored the authentic structure, however, was formulated as a free base rather than the dihydrochloride salt used in clinical trials. GsONC201 </span><em>in vitro</em><span> and </span><em>in vivo</em><span> efficacy and drug bioavailability studies showed no difference compared to Oncoceutics ONC201. Patients treated with GsONC201 (n = 28) showed a median OS of 18 months (</span><em>P</em><span> = .0007). GsONC201 patients who underwent reirradiation showed a median OS of 22 months compared to 12 months for GsONC201 patients who did not (</span><em>P</em><span> = .012).</span></p>
<h4 class="article-title">Conclusions</h4>
<p><span>This study confirms the biological activity of GsONC201 and documents the OS of patients who received the drug; however, GsONC201 was never used as a monotherapy.</span></p>
<p><span class="button"><a href="https://doi.org/10.1093/noajnl/vdab169" target="_blank" rel="noopener">Full-Text Study</a></span></p> https://thecurestartsnow.org/news/preclinical-and-clinical-evaluation-of-german-sourced-onc201-for-the-treatment-of-h3k27m-mutant-diffuse-intrinsic-pontine-glioma/ Thu, 13 Jan 2022 08:28:40 -0500 https://thecurestartsnow.org/10918 Pharmaco-proteogenomic profiling of pediatric diffuse midline glioma to inform future treatment strategies <p><em>Dr. Dun’s latest research helps to outline key attributes between DIPG and DMGs and how we might best find complementary strategies to attack DMG to improve prognoses.  This, when combined with further genetic analysis, will lead to improved outcomes for children fighting these brain tumors.</em></p>
<h4 class="article-title">Abstract</h4>
<p><span>Diffuse midline glioma (DMG) is a deadly pediatric and adolescent central nervous system (CNS) tumor localized along the midline structures of the brain atop the spinal cord. With a median overall survival (OS) of just 9–11-months, DMG is characterized by global hypomethylation of histone H3 at lysine 27 (H3K27me3), driven by recurring somatic mutations in H3 genes including, </span><i>HIST1H3B/C</i><span> (H3.1K27M) or </span><i>H3F3A</i><span> (H3.3K27M), or through overexpression of </span><i>EZHIP</i><span> in patients harboring wildtype H3. The recent World Health Organization’s 5th Classification of CNS Tumors now designates DMG as, ‘H3 K27-altered’, suggesting that global H3K27me3 hypomethylation is a ubiquitous feature of DMG and drives devastating transcriptional programs for which there are no treatments. H3-alterations co-segregate with various other somatic driver mutations, highlighting the high-level of intertumoral heterogeneity of DMG. Furthermore, DMG is also characterized by very high-level intratumoral diversity with tumors harboring multiple subclones within each primary tumor. Each subclone contains their own combinations of driver and passenger lesions that continually evolve, making precision-based medicine challenging to successful execute. Whilst the intertumoral heterogeneity of DMG has been extensively investigated, this is yet to translate to an increase in patient survival. Conversely, our understanding of the non-genomic factors that drive the rapid growth and fatal nature of DMG, including endogenous and exogenous microenvironmental influences, neurological cues, and the posttranscriptional and posttranslational architecture of DMG remains enigmatic or at best, immature. However, these factors are likely to play a significant role in the complex biological sequelae that drives the disease. Here we summarize the heterogeneity of DMG and emphasize how analysis of the posttranslational architecture may improve treatment paradigms. We describe factors that contribute to treatment response and disease progression, as well as highlight the potential for pharmaco-proteogenomics (i.e., the integration of genomics, proteomics and pharmacology) in the management of this uniformly fatal cancer.</span></p>
<h4 class="article-title">Conclusion</h4>
<p><span>Despite extensive developments in novel targeted therapies and precision medicines, the prognosis and outcomes of patients diagnosed with DMG remain unacceptably poor. The recent 5th Edition of the WHO Classification of Tumors of the CNS, subtypes DMG based on H3 K27-alterations and facilitates the categorization of patients according to distinct clinicopathological and molecular features. It is important to note that the hallmark H3-alterations that give rise to DMG are somewhat unique to these tumors; therefore, novel modalities targeting these alterations herald our greatest chance to improve treatment. However, long-term successful outcomes will require treatments that take into appreciation the yet-to-be-characterized proteomic heterogeneity of DMG, including the assessment of the posttranslational architecture. Furthermore, future studies focused on regional contributions to tumor growth and survival are also needed as are studies to determine the mechanisms that influence immune system avoidance. Until genomics-based treatment target identification is integrated with pharmacogenomics and pharmacoproteomics research, the success of trials will remain low, with little hope of patients achieving long-term survival. Coupled evaluation of the DMG genome with the respective proteome, will enhance treatment selection/development, refine the evaluation of patient prognosis, and lead to the development, we hope, of approaches that improve outcomes for those diagnosed with the most aggressive, and poorly survived pediatric cancer.</span></p>
<p><span class="button"><a href="https://doi.org/10.1038/s41388-021-02102-y" target="_blank" rel="noopener">Full-Text Study</a></span></p> https://thecurestartsnow.org/news/pharmaco-proteogenomic-profiling-of-pediatric-diffuse-midline-glioma-to-inform-future-treatment-strategies/ Wed, 12 Jan 2022 10:27:42 -0500 https://thecurestartsnow.org/10908 The H2A.Z-nuclesome code in mammals: emerging functions <p><em>A recent publication in Trends in Genomics highlighted Dr. Valdes-Mora's investigation into the functions and role of histone variations in cancers. This helps to define relevant targets not only in DIPG but also other cancers for the next group of trials. This investigation was funded by the DIPG/DMG Collaborative.</em></p>
<h4 class="article-title">Highlights</h4>
<ul>
<li>
<div class="ce-list--remove-bullets__list-item__text">The histone variant H2A.Z has been involved in many diverse and contrasting functions.</div>
</li>
<li>
<div class="ce-list--remove-bullets__list-item__text">H2A.Z complex biology, including different post-translational modifications, isoforms, and nucleosome partners, may explain the conflicting molecular properties associated with H2A.Z, however, how all these molecular layers work together remains unclear.</div>
</li>
<li>
<div class="ce-list--remove-bullets__list-item__text">H2A.Z is essential for RNA polymerase II pausing and enhancer activation during transcription, as well as initiation of replication origins, accurate mitotic transition, and repair at DNA damaged sites.</div>
</li>
<li>
<div class="ce-list--remove-bullets__list-item__text">H2A.Z is a master regulator for development, cell differentiation, and neural activity; therefore, we predict that future studies will link H2A.Z with a range of neurological and developmental disorders.</div>
</li>
</ul>
<p>H2A.Z is a histone variant that provides specific structural and docking-side properties to the nucleosome, resulting in diverse and specialised molecular and cellular functions. In this review, we discuss the latest studies uncovering new functional aspects of mammalian H2A.Z in gene transcription, including pausing and elongation of RNA polymerase II (RNAPII) and enhancer activity; DNA repair; DNA replication; and 3D chromatin structure. We also review the recently described role of H2A.Z in embryonic development, cell differentiation, neurodevelopment, and brain function. In conclusion, our cumulative knowledge of H2A.Z over the past 40 years, in combination with the implementation of novel molecular technologies, is unravelling an unexpected and complex role of histone variants in gene regulation and disease.</p>
<p><span class="button"><a href="https://doi.org/10.1016/j.tig.2021.10.003" target="_blank" rel="noopener">Full-Text Study</a></span></p> https://thecurestartsnow.org/news/the-h2az-nuclesome-code-in-mammals-emerging-functions/ Wed, 12 Jan 2022 10:00:50 -0500 https://thecurestartsnow.org/10906 Dosing Optimization of CED Drug Delivery for DIPG <p><em>A recent publication in the Journal of Neurosurgery highlighted Dr. Souweidane's efforts to leverage software in order to better predict CED drug delivery in DIPG patients. This may improve researchers' ability to optimize dosing for drugs delivered by CED, such as chemotherapy. CED administration in DIPG patients is largely thanks to research funding by The Cure Starts Now.</em></p>
<h4 class="article-title">Abstract</h4>
<p><span>With increasing use of convection-enhanced delivery (<a href="https://www.dipg.org/treatment/ced/" title="CED">CED</a>) of drugs, the need for software that can predict infusion distribution has grown. In the context of a phase I <a href="/research/research-and-grants/weill-cornell-medical-college-2010-03-16/" title="Weill Cornell Medical College: 2010-03-16">clinical trial</a> for pediatric diffuse intrinsic pontine glioma (DIPG), CED was used to administer an anti-B7H3 radiolabeled monoclonal antibody, iodine-124–labeled omburtamab. In this study, the authors retrospectively evaluated a software algorithm (iPlan Flow) for the estimation of infusate distribution based on the planned catheter trajectory, infusion parameters, and patient-specific MRI. The actual infusate distribution, as determined on MRI and PET imaging, was compared to the distribution estimated by the software algorithm. Similarity metrics were used to quantify the agreement between predicted and actual distributions.</span></p>
<h4 class="article-title">Conclusion</h4>
<p><span>In this study, the iPlan Flow software infusion simulation algorithm was evaluated for use in convection-enhanced delivery (CED) of drugs to the pediatric brainstem. The authors compared simulated outcomes with the actual radiolabeled infusion distribution and used similarity metrics to quantify the agreement between the actual and the estimated infusate distribution. The combined acceptance criteria were met for 8 of 10 evaluated patients, and based on this finding, the authors recommend the use of iPlan Flow software to optimize personalized CED treatment.</span></p>
<p><span class="button"><a href="https://doi.org/10.3171/2020.11.PEDS20571" target="_blank" rel="noopener">Full-Text Study</a></span></p> https://thecurestartsnow.org/news/dosing-optimization-of-ced-drug-delivery-for-dipg/ Thu, 21 Oct 2021 12:17:25 -0500 https://thecurestartsnow.org/10731 Groundbreaking Brain Cancer Trial Funded by Local Charities Demonstrates 2/3 Survival of Mice and Heads to Human Trials <p>Every year around 200-400 children die from the incurable brain tumor, Diffuse Intrinsic Pontine Glioma (<a href="https://www.dipg.org/facts/what-is-dipg/" title="What is DIPG">DIPG</a>) in the US and Australia. The average age of diagnosis for DIPG is just seven years old. There are no effective treatments, and average survival is from 12-18 months.</p>
<p>A <a href="https://doi.org/10.1038/s41467-021-20896-z" target="_blank" rel="noopener">paper</a> published in the prestigious journal, Nature Communications, reveals a revolutionary drug combination that – in animal studies and in world first 3D models of the tumor – is “spectacularly effective in eradicating the cancer cells,” according to lead researcher and pediatric oncologist Associate Professor David Ziegler, from the Children’s Cancer Institute and Sydney Children’s Hospital. These promising results were the product of a research project funded by local charities <strong>The Cure Starts Now Foundation, Jeffrey Thomas Hayden Foundation, Pray Hope Believe, Lauren's Fight for Cure and partner foundations of The DIPG/DMG Collaborative</strong>.</p>
<p>In pre-clinical testing in mouse models, the researchers found that the promising drug combination led to <strong>survival in two thirds of the mice</strong> and that the drug combination completely halted growth of these highly aggressive tumors in these mice.</p>
<p>Importantly, the drug therapy, which is currently in early trials in adult cancer, is the most effective treatment ever tested in laboratory models of this incurable childhood cancer. The treatment is a combination of two drugs: difluoromethylornithine (DFMO), an established drug, and AMXT 1501, an investigational agent being developed by Aminex Therapeutics.</p>
<p>DFMO is increasingly getting attention as a treatment for difficult-to-control cancers like neuroblastoma, another aggressive childhood cancer, and colorectal cancer in adults. DFMO works by targeting the polyamine pathway – an important mechanism that allows tumor cells to grow.</p>
<p>Associate Professor Ziegler has shown for the first time that the polyamine pathway is critical to the growth of DIPG cells. Ziegler and his team developed Australia’s first research program into DIPG by using tumor cells donated by the parents of children who have passed away from the disease. From these, they created the first laboratory models of the tumor in order to test new drugs. These models have been used to show that DIPG can bypass the activity of DFMO by pumping polyamines into the cancer, essentially allowing the tumor to continue growing despite treatment with DFMO. They have now made the breakthrough discovery that treatment with a new developmental drug, AMXT 1501, potently blocks the transport of polyamines into the DIPG cancer cell. Treatment with AMXT 1501 was found to re-sensitize the DIPG cells to DFMO leading to what Associate Professor Ziegler said, “was a spectacular response in animal models, with a significantly increased survival and minimal toxicity (side effects).”</p>

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<p><strong>About The Cure Starts Now</strong>: The Cure Starts Now was started in honor of 6-year-old Elena Desserich, a Cincinnati girl who battled a rare, aggressive form of brain cancer known as DIPG. Today, The Cure Starts Now Foundation has over 40 locations in three countries and is the only cancer foundation dedicated to finding the Homerun Cure™ for cancer by focusing on one of the rarest, most aggressive forms of cancer. Believing in more than just awareness, The Cure Starts Now has funded over $16.5 million in cancer research, resulting in over 133 cutting edge research grants in 15 countries since 2007. Learn more about The Cure Starts Now and their mission to find the Homerun Cure™ for cancer at <a href="https://www.thecurestartsnow.org">https://www.thecurestartsnow.org</a>.<br>Follow us at <a href="https://facebook.com/TheCureStartsNow/" target="_blank" rel="noopener">facebook.com/TheCureStartsNow/</a> and <a href="https://instagram.com/curestartsnow" target="_blank" rel="noopener">instagram.com/curestartsnow</a>.</p>
<p><strong>About The DIPG/DMG Collaborative</strong>: The DIPG/DMG Collaborative is a collection of foundations with the shared mission of efficiently funding and inspiring DIPG cancer research with the belief that through a cure for DIPG, significant advances in other cancer research will be made. As of 2021, membership included 28 independent foundations, dedicated to research funding with transparency, cooperation and the elimination of duplication. You can find more at <a href="https://www.dipgcollaborative.org">www.dipgcollaborative.org</a>.</p>
<p><strong>Media Contact</strong>: <br>Kelly Bogner <br>O: 513.772.4888 | kelly.bogner@thecurestartsnow.org</p> https://thecurestartsnow.org/news/groundbreaking-brain-cancer-trial-funded-by-local-charities-demonstrates-23-survival-of-mice-and-heads-to-human-trials/ Wed, 06 Oct 2021 09:23:44 -0500 https://thecurestartsnow.org/10647 Dual targeting of the epigenome via FACT complex and histone deacetylase is a potent treatment strategy for DIPG <p><em>In 2019 Dr. Maria Tsoli and Dr. David Ziegler of Children's Cancer Institute proposed developing new epigenetic combination treatments against DIPG. <a href="/research/research-and-grants/sydney-childrens-hospital-2019-12-20/" title="Children’s Cancer Institute: 2018-11-26">This project was approved for funding</a> by the DIPG/DMG Collaborative and The Cure Starts Now and here are the results:</em></p>
<h4 class="article-title">Abstract</h4>
<p>Diffuse intrinsic pontine glioma (DIPG) is an aggressive and incurable childhood brain tumor for which new treatments are needed. CBL0137 is an anti-cancer compound developed from quinacrine that targets facilitates chromatin transcription (FACT), a chromatin remodeling complex involved in transcription, replication, and DNA repair. We show that CBL0137 displays profound cytotoxic activity against a panel of patient-derived DIPG cultures by restoring tumor suppressor TP53 and Rb activity. Moreover, in an orthotopic model of DIPG, treatment with CBL0137 significantly extends animal survival. The FACT subunit SPT16 is found to directly interact with H3.3K27M, and treatment with CBL0137 restores both histone H3 acetylation and trimethylation. Combined treatment of CBL0137 with the histone deacetylase inhibitor panobinostat leads to inhibition of the Rb/E2F1 pathway and induction of apoptosis. The combination of CBL0137 and panobinostat significantly prolongs the survival of mice bearing DIPG orthografts, suggesting a potential treatment strategy for DIPG.</p>
<h4 class="article-title">Highlights</h4>
<ul id="ulist0010" class="ce-list--remove-bullets">
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<div class="ce-list--remove-bullets__list-item__text">CBL0137 inhibits DIPG tumor growth and restores H3K27me3 through FACT inhibition</div>
</li>
<li class="ce-list--remove-bullets__list-item">
<div class="ce-list--remove-bullets__list-item__text">Co-administration of CBL0137 and panobinostat enhances survival in DIPG xenografts</div>
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<li class="ce-list--remove-bullets__list-item">
<div class="ce-list--remove-bullets__list-item__text">CBL0137 and panobinostat synergistically inhibit the Rb/E2F1 pathway and restore H3K27me3</div>
</li>
</ul>
<p><span class="button"><a href="https://doi.org/10.1016/j.celrep.2021.108994" target="_blank" rel="noopener">Full-Text Study</a></span></p>
<p><span class="button"><a href="/news/australian-researchers-find-new-way-to-target-deadly-childhood-cancer-with-cbl0137/" target="_blank" title="Australian Researchers Find New Way to Target Deadly Childhood Cancer With CBL0137" rel="noopener">Learn More</a></span></p> https://thecurestartsnow.org/news/dual-targeting-of-the-epigenome-via-fact-complex-and-histone-deacetylase-is-a-potent-treatment-strategy-for-dipg/ Thu, 13 May 2021 11:19:30 -0500 https://thecurestartsnow.org/10078 Australian Researchers Find New Way to Target Deadly Childhood Cancer With CBL0137 <p><i>The following work was supported by grants from The Cure Starts Now and the DIPG/DMG Collaborative.</i></p>
<p>Research by Australian scientists could pave the way to a new treatment for a currently incurable brain cancer in children called Diffuse Intrinsic Pontine Glioma, or <a href="https://www.dipg.org/facts/what-is-dipg/" title="What is DIPG">DIPG</a>. Affecting about 150-300 children in US each year, DIPG is a devastating disease with a median survival range of 8-11 months, according to <a href="https://www.dipg.org/facts/dipg-survival-rate-and-prognosis/" title="DIPG Prognosis and Survival Rates">DIPG.org</a>.</p>
<p>The research, led by scientists at Children’s Cancer Institute and published this week in the international journal, Cell Reports, offers an exciting new therapeutic approach for the treatment of DIPG by using a new anti-cancer drug.</p>
<p>The new drug, <strong>CBL0137</strong>, is an anti-cancer compound developed from the antimalarial drug quinacrine. The researchers found that CBL0137 directly reverses the effects of the key genetic drivers in DIPG, and has a profound effect against DIPG tumor models. They also found CBL0137 is even more effective when combined with a second drug, panobinostat, a new type of drug known as a histone deacetylase (HDAC) inhibitor. When used in combination, the two drugs were found to work synergistically, each enhancing the others effects against DIPG.</p>
<p>Associate Professor David Ziegler, Group Leader at Children’s Cancer Institute and pediatric oncologist at the Kids Cancer Centre, Sydney Children’s Hospital, said there is a desperate need for a new and more effective way to treat DIPG.</p>
<blockquote>
<p>“Over the years, many different types of treatments have been tried for DIPG, but none so far have proven effective in clinical trials of children with the disease,” he said. “Part of the problem is that the genetic driver in DIPG is a master gene that controls thousands of other genes. Until now, we have not known how to switch it off. Our data shows that CBL0137 acts to reverse the effects of this master gene, and then switch off the growth of the DIPG tumor cells.”</p>
</blockquote>
<p>In the newly published study, Associate Professor Ziegler and his colleagues in the Brain Tumours Group at Children’s Cancer Institute built on earlier research carried out by the Institute’s Experimental Therapeutics Group, who found that CLB037 was effective against neuroblastoma. Taking a similar approach with DIPG, the Brain Tumours Group confirmed that CBL0137 interferes with the growth of DIPG tumors by inhibiting an important molecule known as FACT (needed for DNA transcription, replication and repair). They found that FACT binds with the key genetic driver in DIPG – a mutation called K27M. By treating DIPG cells with CBL0137 they were able to target this gene and stop tumour cells from growing. Next, they tested CBL0137 in ‘patient-derived xenografts’ − mice specially bred to grow DIPG cells taken directly from children with the disease − showing it effectively penetrated the blood-brain barrier and increased survival time.</p>
<p>When the researchers added panobinostat to the mix, they found that the CBL0137-panobinostat combination was even more effective at killing DIPG cells and further improved the survival time of mice with DIPG.</p>
<blockquote>
<p>“K27M is the Achilles heel of DIPG tumor cells,” said Associate Professor Ziegler. “The finding that CBL0137 indirectly acts against this genetic driver is very exciting, and gives us great hope for this treatment strategy.”</p>
</blockquote>
<p>A/Prof Ziegler will lead an international clinical trial of CBL0137 for children with DIPG that will open in the top children’s hospitals in the US and Australia. Plans to launch the trial are boosted by the fact that CBL0137 has recently successfully completed testing in phase I clinical trials in adults with solid tumors.</p>
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<p><strong>About The Cure Starts Now<br></strong>The Cure Starts Now was started by parents in response to a desire to fund Homerun Cure™  and universal cure strategy research, starting with those cancers that experts believe we can learn the most from: DIPG/DMG, medulloblastoma and pediatric brain cancers. Today, The Cure Starts Now Foundation has over 40 locations in three countries.  Believing in more than just awareness, The Cure Starts Now has funded over $16 million in cancer research, resulting in over 100 cutting edge research grants in 15 countries since 2007. Learn more about The Cure Starts Now and their mission to find the Homerun Cure™ for cancer at <a href="http://www.thecurestartsnow.org">www.thecurestartsnow.org</a>, and follow <a href="http://www.facebook.com/TheCureStartsNow/">www.facebook.com/TheCureStartsNow/</a> for updates.</p>
<p><strong>About Children’s Cancer Institute</strong> <br>Originally founded by two fathers of children with cancer in 1976, Children’s Cancer Institute is the only independent medical research institute in Australia wholly dedicated to research into the causes, prevention and cure of childhood cancer. Forty years on, our vision is to save the lives of all children with cancer and improve their long-term health, through research. The Institute has grown to now employ over 300 researchers, operational staff and students, and has established a national and international reputation for scientific excellence. Our focus is on translational research, and we have an integrated team of laboratory researchers and clinician scientists who work together in partnership to discover new treatments which can be progressed from the lab bench to the beds of children on wards in our hospitals as quickly as possible. These new treatments are specifically targeting childhood cancers, so we can develop safer and more effective drugs and drug combinations that will minimise side-effects and ultimately give children with cancer the best chance of a cure with the highest possible quality of life. More at <a href="https://www.ccia.org.au/" target="_blank" rel="noopener">www.ccia.org.au</a></p>
<p><span class="button"><a href="https://doi.org/10.1016/j.celrep.2021.108994">Read the scientific study</a></span></p> https://thecurestartsnow.org/news/australian-researchers-find-new-way-to-target-deadly-childhood-cancer-with-cbl0137/ Tue, 13 Apr 2021 08:42:44 -0500 https://thecurestartsnow.org/9992 The Do's and Don'ts of Helping a Friend Whose Child is Battling Cancer <p>A cancer diagnosis is life-altering but when the diagnosis is for your child, life is thrown off its axis and becomes complete chaos. For parents whose child is undergoing treatment, the road is exhausting and never-ending, leaving them with little time for anything other than taking care of their child.</p>
<p>There are many things people can do and should not do when supporting friends who are dealing with a childhood cancer diagnosis. We have compiled a list of Do’s and Don’ts to help you navigate the unspoken questions and unchartered waters of pediatric cancer.</p>
<p><strong>Don’t: Abandon Your Friends<br /></strong>Feeling like you are on a deserted island with no one to turn to for help when your child is diagnosed with cancer is an awful feeling. Parents need to know that their friends and family are still there to support them through the worst time in their lives. No matter how hard and awkward this may be for you, it is a million times more difficult for your friends. They have been forced to travel the unthinkable road of childhood cancer and should not have to go down it alone. They need you, and this is an opportunity for you to show your friends that you will be right there supporting them no matter what. You are their friend and they are not alone.</p>
<p><strong>Do: Let Your Friends Know You’re Thinking of Them<br /></strong>Pick up the phone and check in on your friends often. They need your support now more than ever. Even if you don’t know what to say, sending a simple text message or card with the words, “I’m thinking of you,” is more than enough to show them that you care.</p>
<p><strong>Don’t: Ask What You Can Do to Help<br /></strong>Asking parents how you can help puts more overwhelming pressure on them when they are already stressed, emotional, and filled with worry for their baby. Their lives have been turned upside down, so it may be hard for them to think of a way you can help. Instead, suggest a task that you would be willing to do.</p>
<p><strong>Do: Help in Any Way You Can<br /></strong>Chores often take a back seat in times like these. Offering to help with household chores can go a long way. Simply mowing the lawn, going on a grocery run, cleaning the house, walking the dog, or watching their other kids can be a big help. These simple tasks get forgotten when parents are focusing on saving their child’s life.</p>
<p><strong>Don’t: Suffocate the Family<br /></strong>There is a fine line between helping your friends and overstepping boundaries. There will be days they do not want to be bothered or would prefer to spend time with their children without interruptions and, you need to respect that, even if you planned on stopping by to check-in. Instead, opt for dropping off dinner, so they don’t have to worry about making a meal and can spend even more quality time with their kids.</p>
<p><strong>Do: Offer to Act as Their Liaison for Everyone Who Wants to Help<br /></strong>Be the friend who steps up to act as the protective bubble between well-meaning people and parents trying to take care of their sick child. Offer to coordinate all service efforts intended for the family and handle updates. Your friends want to focus on their child, not spend the vast majority of their time fielding calls and scheduling people to help with what they need, such as dinners or housework. They also don’t want to have to continuously answer questions about their child’s prognosis or timeline; as their liaison, you would be able to take this off their plate.</p>
<p><strong>Don’t: Rattle Off Statistics<br /></strong>Statistics help no one, especially parents whose child has been diagnosed with cancer. Their child is the only statistic that matters. You may think you are helping if the statistics fall in their favor, but that doesn’t mean anything and is likely not comforting for your friends. If you have nothing helpful to say, it’s best to say nothing at all and just offer to help.</p>
<p><strong>Do: Leave the Medical Advice to the Doctors<br /></strong>Unless you are an oncologist, don’t recommend treatment protocols or alternative/holistic options. Nine times out of 10 parents have already read about it, possibly considered it, or it's too absurd. While your recommendations may be well-intentioned, they could also be dangerous unless you have a degree to back them up.</p>
<p><strong>Don’t: Stare<br /></strong>It’s important that you not stare at your friend’s child. The treatment their child is undergoing, likely, has outward side effects such as hair loss and weight gain, along with visible ports and/or IV lines. This can cause a child to feel self-conscious and, staring at them won’t help matters.</p>
<p><strong>Do: Be a Shoulder to Lean On and Listen to Their Grief<br /></strong>Sometimes all parents need is someone who will just listen and sit with them. You don't have to have the answers. Allowing them to lean on you for support while openly grieving their frustrations, pain, and hopelessness can be therapeutic. You don't need to interject your thoughts or opinions; listening can help in more ways than you know.</p>
<p><strong>Don’t: Forget the Siblings<br /></strong>Siblings are affected just as much as parents. Like their parents, they are forced to sit helplessly on the sidelines, watching their brother or sister suffer, knowing there's nothing they can do to help. They also often struggle with feelings of being left out and forgotten because their sibling needs so much of their parent’s time. Offer to take the sibling(s) on a fun outing, stop by with a gift or care package for them, pick them up from school, drive to sporting practices, and always remember to check in with them.</p>
<p><strong>Do: Provide Distractions for the Family<br /></strong>Cancer and treatment options are always at the forefront of their thoughts. Taking their minds off of it, even for a few minutes, helps. Stop by with a fun game, offer to host a movie night, send care packages, or even just send a funny card that will make them laugh.</p>
<p><strong>Don’t: Make a donation to Your Preferred Charity In Their Child’s Name<br /></strong>Donating to a random charity you already support in no way benefits your friends or their child. It might make you feel like you've done a good deed in their child's honor, but it could have the opposite effect on your friends. Instead, speak with the family first to make sure they are okay with you donating in their honor.</p>
<p><strong>Do: Fundraise for the Family<br /></strong>This is a great way to show support for the family. Fundraising can be done with the family as the beneficiary to help with bills, medical care, or making memories. If the family explicitly does not want this type of help, offer to fundraise for the charity of their choice that supports their child’s cancer.</p>
<p><strong>Don’t: Visit If You or Anyone in Your Household is Sick<br /></strong>The last thing families have time for when their child is undergoing treatment is the risk of getting sick themselves or, worse, their child getting sick on top of their cancer. If you or anyone in your family is sick, stay away until you are all healthy.</p>
<p><strong>Do: Offer to Give the Parents a Break<br /></strong>No parent wants to leave their sick child, but short breaks are necessary for their mental health and sanity. Offer to watch their child while they go on a walk for some fresh air, take a hot shower, grab a coffee, or spend the day with their other children. Even just 15 minutes away can provide them with a boost of energy to get through the rest of the day.</p> https://thecurestartsnow.org/news/the-dos-and-donts-of-helping-a-friend-whose-child-is-battling-cancer/ Fri, 12 Mar 2021 09:56:59 -0500 https://thecurestartsnow.org/9863 Breakthrough International Cancer Trial Halts Tumor Growth 
<div class="embed-container"><iframe src="https://www.youtube.com/embed/Vfr4JVf9dFg" frameborder="0" allowfullscreen=""></iframe></div>
<p><strong>The Cure Starts Now Foundation funds novel trial that halts tumor growth in 2/3 of study</strong></p>
<p>CINCINNATI | February 18, 2021 – The Cure Starts Now announced that the Polyamine Pathway Metabolism as a Novel Therapeutic Option for Diffuse Intrinsic Pontine Glioma (<a href="https://www.dipg.org/facts/what-is-dipg/" title="What is DIPG">DIPG</a>) grant, funded in partnership with the DIPG/DMG Collaborative, has resulted in the identification of a potentially revolutionary new drug treatment for brain cancer. <br><br>In pre-clinical mouse model testing, researchers found the promising drug combination of Difluoromethylornithine (DFMO) and AMXT 1501 led to the survival of two-thirds of the mice and that it stopped the growth of DIPG tumors in the mice. This drug therapy is the most effective treatment ever tested in laboratory models of this highly aggressive and incurable pediatric cancer.</p>
<blockquote>
<p>“When you combine these two drugs, the result is really spectacular,” said lead researcher and pediatric oncologist Dr. David Ziegler from the Children’s Cancer Institute and Sydney Children’s Hospital. “What we've seen is, actually, what we think is the most active drug that anyone's ever tested in the lab for DIPG and the tumors stop growing.”</p>
</blockquote>
<p>“Breakthroughs like this one are part of the reason we founded The Cure Starts Now,” said Brooke Desserich, Executive Director of The Cure Starts Now. “They provide parents with much-needed hope and move us immensely closer to finding the elusive cure for this horrific brain cancer. We are so proud of Dr. David Ziegler and his wonderful team of researchers. We can’t wait to start clinical trials.”</p>
<p>This is all part of The Cure Starts Now’s 12-year plan focusing on the Homerun Cure™ for all cancers. The belief behind this strategy is that to truly cure all cancers you have to first focus on those cancers that are immune to treatment, affect children, and are the biggest bullies with the highest death rate. With DIPG checking all three boxes, it became the focal point. The Cure Starts Now then adopted a generational funding strategy approach, effectively not only funding “test tube” grants, but also making the necessary preparations setting up concurrent clinical trials and bringing together the expertise to deliver results at three times the speed.</p>
<p>“For us, cancer research is like a relay race,” said Keith Desserich, Chairman of The Cure Starts Now. “It’s not just enough to beat cancer on the first lap – you have to also have the next person ready to take over for the second one and until you finish the race. I guess that’s just what we try to do differently: we believe it requires a long-term focus that not only identifies targets, but brings together researchers and then figures out how to make it work for the patient.”<br><br>In 2018, The Cure Starts Now identified this novel approach in Australia by Dr. Ziegler, seeking to block the polyamine pathway and stop the growth of DIPG tumors. After funding the grant, the charity began looking toward the future and, in the event that the lab research was a success, already started efforts to deliver the promising drug combination into clinical trials over the next four years through the <a href="https://connectconsortium.org/">CONNECT Consortium</a>, an international collaborative network of pediatric cancer centers, so that it would be available in 15 countries to children in the fight against this horrific cancer.<br><br>With the success of Dr. Ziegler’s pre-clinical mouse model testing, The Cure Starts Now’s long-term strategy has sped up the test-tube to bedside timeline by nearly three times, effectively ensuring that the wait between each step in the process is as minimal as possible.<br><br>Dr. Ziegler said that clinical trials of the drug combination in DIPG are planned to begin this year in children in a global study led by the Children’s Cancer Institute and, in combination with, the CONNECT Consortium, which is operational funded by The Cure Starts Now, the Brooke Healey Foundation and the Reflections of Grace Foundation.</p>
<p><a href="https://doi.org/10.1038/s41467-021-20896-z" target="_blank" rel="noopener"><span class="button">Full-Text Study</span></a></p>
<p><em><u> </u></em></p>
<p><strong>About The Cure Starts Now</strong><u><br></u>The Cure Starts Now was started in honor of 6-year-old Elena Desserich, a Cincinnati girl who battled a rare, aggressive form of brain cancer known as DIPG. Today, The Cure Starts Now Foundation has over 40 locations in three countries and is the only cancer foundation dedicated to finding the Homerun Cure™ for cancer by focusing on one of the rarest, most aggressive forms of cancer. Believing in more than just awareness, The Cure Starts Now has funded over $16.4 million in cancer research in partnership with the DIPG Collaborative. This includes 100+ cutting edge research grants at over 100 hospitals in 15 countries since 2007. Learn more about The Cure Starts Now and their mission to find the Homerun Cure™ for cancer at <a href="http://www.thecurestartsnow.org">www.thecurestartsnow.org</a>, and follow <a href="http://www.facebook.com/TheCureStartsNow/">www.facebook.com/TheCureStartsNow/</a> for updates.</p>
<hr>
<p><em>Video Transcript: </em></p>
<p><em>Dr. David Ziegler and Dr. Maria Tsoli discuss their research team’s groundbreaking discovery into the treatment of DIPG, and what it may mean for children who are diagnosed with this disease. This project is the result of the <a href="https://dipgcollaborative.org/wp-content/uploads/2019/01/ES-Tsoli-Polyamine-pathway-metabolism-for-DIPG-175089.pdf">Polyamine Pathway Metabolism as a Novel Therapeutic Option for Diffuse Intrinsic Pontine Glioma</a> grant that was originally funded in 2018 by The Cure Starts Now and The DIPG Collaborative for $175,089. The grant was designed to investigate vulnerabilities in these types of tumors and to pair it with a drug. </em></p>
<p><em>Dr. David Ziegler:              “DIPG is the most common, what we call high-grade glioma that occurs in children. It peaks in children at about the age between five and seven years. Usually comes on very quickly over a couple of weeks, sometimes just with very mild symptoms. The outcome for these kids is terrible. And we have to go and tell their parents really what's one of the hardest conversations in the world to have. Which is that, essentially, your child has an incurable disease. Essentially, almost all of these children will die, usually within about a year of that diagnosis.”</em></p>
<p><em>Dr. Maria Tsoli:                  “One of the key challenges for us researchers has been the fact that we haven't had any biological material to do any drug testing.”</em></p>
<p><em>Dr. David Ziegler:              “Several years ago, we set up a tumor donation program. The parent could offer to have that tumor collected and put in our tumor bank. And, actually, allow research to be performed on these tumors for the first time in Australia, to start to come up with new treatments.”</em></p>
<p><em>Dr. Maria Tsoli:                  “We have found a few drugs that seem to be remarkably effective at reducing the growth of DIPG tumors.”</em></p>
<p><em>Dr. David Ziegler:              “We have been working on drugs that target what's called the polyamine pathway.”</em></p>
<p><em>Dr. Maria Tsoli:                  “Our team has found two drugs. Difluoromethylornithine (DMFO), a drug that stops the synthesis of polyamines, and AMXT-1501, a drug that stops the polyamines from entering the cells. Together, in combination, are being very effective at stopping the growth of DIPG tumors.”</em></p>
<p><em>Dr. David Ziegler:              “When you combine these two drugs, the result is really spectacular. What we've seen is actually what we think is the most active drug that anyone's ever tested in the lab for DIPG and the tumors stop growing.”</em></p>
<p><em>Dr. Maria Tsoli:                  “The next steps will be to take this therapy to the clinic. And offer it to children with DIPG, through Phase 1 and Phase 2 clinical trials.”</em></p>
<p><em>Dr. David Ziegler:              “We're working very closely with the company who's making this new drug. We're working with international researchers and clinicians from around the world. We're aiming to open the trial in the next year. Which, for the first time, will offer this new treatment for children with DIPG and other brain tumors as well.”</em></p>
<p><em>Dr. Maria Tsoli:                  “I would like to thank a lot of philanthropic associations and funding agencies for believing in this work.”</em></p>
<p><em>Dr. David Ziegler:              “It's only thanks to the support we get through the community and through parents and fundraisers and other groups that allow us to keep this research going, and to do what we do. When we started this program in DIPG, it was driven really by the parents.”</em></p>
<p><em>Dr. Maria Tsoli:                  “And without them, we wouldn't have been in the position of being able to do any testing and more importantly, identify this particular treatment.”</em></p>
<p><em>Dr. David Ziegler:              “We believe this is one of the first really important breakthroughs. And, ultimately, we won't be having those conversations with parents anymore saying, ‘This is incurable, there is no hope.’ But for the first time we will start to offer hope. For the first time, we'll start to offer cures. That's what we are going to keep working towards until we reach that goal.”</em></p>
<p><em>In summary, this promising new drug combination has the potential to change the way DIPG is treated and possibly stop the growth of the horrific tumors by blocking the transport of polyamines into DIPG cells. This type of breakthrough is the reason The Cure Start Now was founded. It provides parents with much needed hope and moves us immensely closer to finding the elusive cure for this monstrous brain cancer.</em></p> https://thecurestartsnow.org/news/breakthrough-international-cancer-trial-halts-tumor-growth/ Fri, 19 Feb 2021 09:13:13 -0500 https://thecurestartsnow.org/9812 Researchers Identify/Advance Potential Revolutionary New Drug Treatment for DIPG / DMG As Part of a Collaborative Foundational Partnership <p>Every year around 200-400 children die from the incurable brain tumor, Diffuse Intrinsic Pontine Glioma (<a href="https://www.dipg.org/facts/what-is-dipg/" title="What is DIPG">DIPG</a>) in the US and Australia. The average age of diagnosis for DIPG is just seven years. There are no effective treatments, and average survival is from 12-18 months.</p>
<p>A <a href="https://www.nature.com/articles/s41467-021-20896-z" target="_blank" rel="noopener">paper</a> published yesterday in the prestigious journal, Nature Communications, reveals a potential revolutionary drug combination that – in animal studies and in world first 3D models of the tumor – is “spectacularly effective in eradicating the cancer cells,” according to lead researcher and pediatric oncologist Associate Professor David Ziegler, from the Children’s Cancer Institute and Sydney Children’s Hospital.  These promising results were the product of a research project funded by <strong>The Cure Starts Now</strong> <strong>Foundation, The Julian Boivin Courage for Cures Foundation, Hope for Caroline Foundation, The Cure Starts Now Australia, Reflections Of Grace, Aidan's Avengers, Austin Strong, The Brooke Healey Foundation, ChadTough Foundation, Cure Brain Cancer, Grant's Ginormous Gift , Jeffrey Thomas Hayden Foundation, Love Chloe Foundation,  Musella Foundation, Operation Grace White, Pray Hope Believe, Ryan's Hope, Storm the Heavens Fund, Benny's World, Julia Barbara Foundation, Lauren's Fight for Cure,  Lily Larue Foundation, The Isabella and Marcus Foundation (a partnership funding of The DIPG/DMG Collaborative)</strong>.</p>
<p>In pre-clinical testing in mouse models, the researchers found that the promising drug combination led to survival in two thirds of the mice and that the drug combination completely halted growth of these highly aggressive tumors in these mice.</p>
<p>Importantly, the drug therapy, which is currently in early trials in adult cancer, is the most effective treatment ever tested in laboratory models of this incurable childhood cancer. The treatment is a combination of two drugs: difluoromethylornithine (DFMO), an established drug, and AMXT 1501, an investigational agent being developed by Aminex Therapeutics.</p>
<p>DFMO is increasingly getting attention as a treatment for difficult-to-control cancers like neuroblastoma, another aggressive childhood cancer, and colorectal cancer in adults. DFMO works by targeting the polyamine pathway – an important mechanism that allows tumor cells to grow.</p>
<p>Associate Professor Ziegler has shown for the first time that the polyamine pathway is critical to the growth of DIPG cells. Ziegler and his team developed Australia’s first research program into DIPG by using tumor cells donated by the parents of children who have passed away from the disease. From these, they created the first laboratory models of the tumor in order to test new drugs. These models have been used to show that DIPG can bypass the activity of DFMO by pumping polyamines into the cancer, essentially allowing the tumor to continue growing despite treatment with DFMO. They have now made the breakthrough discovery that treatment with a new developmental drug, AMXT 1501, potently blocks the transport of polyamines into the DIPG cancer cell. Treatment with AMXT 1501 was found to re-sensitize the DIPG cells to DFMO leading to what Associate Professor Ziegler said, “was a spectacular response in animal models, with a significantly increased survival and minimal toxicity (side effects).”</p>
<p>Associate Professor Ziegler said that clinical trials of the drug combination in DIPG are planned to begin this year in children in a global study led by the Children’s Cancer Institute and in combination with the <a href="https://connectconsortium.org/" target="_blank" rel="noopener">CONNECT Consortium</a>, a $12 million dollar, 16 hospital member trial collaborative in 4 countries and with operational funding by <strong>The Cure Starts Now Foundation, the Brooke Healey Foundation</strong> and the <strong>Reflections of Grace Foundation</strong>.</p>
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<p><strong>About The Cure Starts Now</strong></p>
<p>The Cure Starts Now was started by parents in response to a desire to fund Homerun Cure™  and universal cure strategy research, starting with those cancers that experts believe we can learn the most from:  DIPG/DMG, medulloblastoma and pediatric brain cancers. Today, The Cure Starts Now Foundation has over 40 locations in three countries.   Believing in more than just awareness, The Cure Starts Now has funded over $15 million in cancer research, resulting in over 97 cutting edge research grants in 15 countries since 2007. Learn more about The Cure Starts Now and their mission to find the Homerun Cure™ for cancer at <a href="http://www.thecurestartsnow.org">www.thecurestartsnow.org</a>, and follow <a href="http://www.facebook.com/TheCureStartsNow/">www.facebook.com/TheCureStartsNow/</a> for updates.</p>
<p><strong>About The DIPG/DMG Collaborative </strong></p>
<p>The DIPG/DMG Collaborative is a collection of foundations with the shared mission of efficiently funding and inspiring DIPG cancer research with the belief that through a cure for DIPG, significant advances in other cancer research will be made.  As of 2021, membership included 28 independent foundations, dedicated to research funding with transparency, cooperation and the elimination of duplication.  You can find more at <a href="http://www.dipgcollaborative.org">www.dipgcollaborative.org</a>.</p>
<p><strong>About Children’s Cancer Institute </strong></p>
<p>Originally founded by two fathers of children with cancer in 1976, Children’s Cancer Institute is the only independent medical research institute in Australia wholly dedicated to research into the causes, prevention, and cure of childhood cancer. Forty years on, our vision is to save the lives of all children with cancer and improve their long-term health, through research. The Institute has grown to now employ over 300 researchers, operational staff and students, and has established a national and international reputation for scientific excellence. More at <a href="http://www.ccia.org.au">www.ccia.org.au</a>.  </p>
<p><strong>About Aminex Therapeutics </strong></p>
<p>Aminex Therapeutics, Inc. is a clinical-stage biotechnology company focused on the development of a novel small molecule combination therapy for the treatment of broad range of cancer indications. Aminex has advanced AMXT 1501+ DFMO through target discovery, patenting, pre-clinical research and now into clinical development forthe potential benefit of cancer patients. Formore information,please visit <a href="https://aminextx.com/" target="_blank" rel="noopener">www.aminextx.com</a></p> https://thecurestartsnow.org/news/researchers-identifyadvance-potential-revolutionary-new-drug-treatment-for-dipg-dmg-as-part-of-a-collaborative-foundational-partnership/ Sat, 13 Feb 2021 12:05:22 -0500 https://thecurestartsnow.org/9806 Cincinnati Girl Raises Over $50,000 For Charity in Honor of Late Twin Brother <h3 class="article-title">To Honor Her Twin Brother, Grant, Who Passed Away From Brain Cancer, 7-Year-Old Julia Wolf, Turned an $8 Request Into Funding of a Full Research Grant Ahead of Their 8th Birthday.</h3>
<p>CINCINNATI | February 9, 2021 -- The Cure Starts Now announced today that 7-year-old Julia Wolf’s “$8 by our 8th Birthday” Facebook fundraiser honoring her late twin brother, Grant, has raised over $50,000 for cancer research. The fundraiser surpassed her initial goal of $240 within the first hour on Thursday, February 4, 2021, and has continued gaining support since then.</p>
<p>Grant Wolf was diagnosed with <a href="https://medulloblastoma.org/medullo-facts/what-is-medulloblastoma/">medulloblastoma</a>, a malignant tumor in the cerebellum region of the brain, in September 2019. He fought with courage and bravery during his difficult battle and continued to smile no matter how tough it became. He inspired the community of Loveland and his supporters, known as “Grant’s Wolf Pack,” to find joy in challenging times and never give up even when the odds are stacked against them. Sadly, Grant passed away on January 22, 2021, just over 16 months after his diagnosis.</p>
<p>With their 8th birthday quickly approaching after Grant’s passing, Julia was worried about celebrating without her twin by her side. During his funeral, Julia had a brilliant idea that she shared with her mom, Sara Wolf, that night at bedtime. “[Julia] wanted to raise money to help find a cure for brain cancer so that no other kids have to go through this tough time.”</p>
<figure><img alt="Grant Wolf" src="/media/3871/grant-og-image.jpg">
<figcaption>Grant tragically passed away on January 22, 2021, just over 16 months after his diagnosis.</figcaption>
</figure>
<p>In the fall of 2020, the Wolf family attended Graeter’s Ice Cream’s annual fundraising event “Cones for the Cure.” At the event, Julia learned about The Cure Starts Now and its mission to cure pediatric brain cancer. When she decided to help children fighting cancer, she remembered that trip to Graeter’s and wanted to donate to The Cure Starts Now. With the help of her mom, Julia created a Facebook fundraiser requesting everyone donate a humble $8 by her and her twin’s 8th birthday on February 11, 2021, to honor Grant.</p>
<p>Julia's family is proud that this initiative to support cancer research was completely her idea, and they are in awe of the communities outpouring response to honor Grant's legacy.</p>
<p>“We are so proud of Julia for thinking of both Grant and other kids during her birthday week,” said Sara Wolf. “We are heartbroken she will be growing up without her twin brother at her side physically, but she has big ideas and a big heart, so we know this is just the first of many ways she will honor his memory while making a difference in the world at the same time.”</p>
<p>When Julia was informed by her parents that her fundraiser had raised enough money to fund an entire research grant, she was extremely excited. A moment later, she asked, “Wait, do they always call them grants or is that just for us?”</p>
<p>“I feel very, very, very proud because I know that this is going to make a big change and I’m hoping at some point soon that scientists and doctors figure out how to stop cancer forever,” said Julia. “I know Grant is proud of me too.”</p>
<blockquote>
<p>“Funding research for childhood cancer is vital and, at 7-years-old, Julia has already raised enough money to fund a grant. We are amazed by her tenacity and outstanding support in honor of Grant. At such a young age, we are floored by what she has accomplished with just one fundraiser. Her birthday effort will help so many other families, and it provides the chance to, hopefully, bring us closer to the cure.” – Brooke Desserich, Executive Director of The Cure Starts Now</p>
</blockquote>
<p><span>To further honor</span> Grant, Julia wanted to give children battling cancer stuffed dogs because she and Grant loved playing with them throughout his battle. Grant always had one by his side during every appointment. Julia and her mom bought 30 stuffed dogs to donate to the Child Life Department at Cincinnati Children’s Hospital in hopes that when the stuffed animals are given to kids fighting cancer, they will bring them the same joy and comfort as they did for Grant.</p>
<p>To learn more about The Cure Starts Now and to make a donation in Grant’s honor, please visit <a href="https://donate2csn.org/">https://donate2csn.org/</a>.</p>
<p><em><u> </u></em></p>
<p><strong>About The Cure Starts Now</strong><u><br></u>The Cure Starts Now was started in honor of 6-year-old Elena Desserich, a Cincinnati girl who battled a rare, aggressive form of brain cancer known as DIPG. Today, The Cure Starts Now Foundation has over 40 locations in three countries and is the only cancer foundation dedicated to finding the Homerun Cure™ for cancer by focusing on one of the rarest, most aggressive forms of cancer. Believing in more than just awareness, The Cure Starts Now has funded over $16.4 million in cancer research in partnership with the DIPG Collaborative. This includes 100+ cutting edge research grants at over 100 hospitals in 15 countries since 2007. Learn more about The Cure Starts Now and their mission to find the Homerun Cure™ for cancer at <a href="http://www.thecurestartsnow.org">www.thecurestartsnow.org</a>, and follow <a href="http://www.facebook.com/TheCureStartsNow/">www.facebook.com/TheCureStartsNow/</a> for updates.</p> https://thecurestartsnow.org/news/cincinnati-girl-raises-over-50-000-for-charity-in-honor-of-late-twin-brother/ Wed, 10 Feb 2021 11:36:48 -0500 https://thecurestartsnow.org/9801 Childhood Cancer Talk Radio with Janet Demeter Featuring The Cure Starts Now’s Keith Desserich <p><em><a href="https://toginet.com/podcasts/childhoodcancertalkradio/?s=childhoodcancertalkradio" target="_blank" data-anchor="?s=childhoodcancertalkradio" rel="noopener">Childhood Cancer Talk Radio</a> promotes awareness of this very real and prevalent disease by providing a forum for conversation and advocacy in a growing community of affected families. </em></p>
<p><strong><em>Disclaimer:</em></strong><em> This transcription is not the production of TogiNet Radio, Beck Multimedia or Jack's Angels Foundation but was provided by The Cure Starts Now. The original podcast can be found <a href="https://www.podtrac.com/pts/redirect.mp3/https://www.toginet.com/podcasts/childhoodcancertalkradio/ChildhoodCancerTalkRadioLIVE_2021-01-28.mp3?type=podpage" data-anchor="?type=podpage">here</a>.</em></p>
<p><strong>Janet Demeter:</strong><em><strong><br></strong></em>Welcome to Childhood Cancer Talk Radio where kids come first for the cure. I'm Janet Demeter your host, and out of the gate, this year, 2021, despite the COVID-19 pandemic, is ripe for hopeful future for childhood cancer. With the resolve of passing the Creating Hope Act for another four years of funding, just by the end of the very trying year of 2020, we look forward to success for the Kids First Data Resource Center at NIH with the Gabriella Miller Kids First Research Act 2.0 with a possible reintroduction this week. This is the last week of January. What are we, two weeks in now to a new administration? To think they would even get this one on the floor, that's amazing. But I'm keeping my eyes peeled because I got a notification that it might happen.</p>
<p>This crucial research program, in particular at NIH for pediatric disease is helping to prioritize pediatric research and also is affecting new innovations in collaboration, in research, and also for funding, urgently needed. Despite years of hard work among childhood cancer advocates to really move the experiential needle for children who are diagnosed with cancer. In some areas, we're so very close to having more effective therapies, but outcomes have not changed significantly yet. And I say yet because we're really, really close, and this is demonstrated most powerfully in the space of pediatric brain cancer research.</p>
<p>If it weren't for my guest today and the organizations he built and helped build over the last 12 years, I cannot say with confidence that we would be so close. Most do not realize that childhood brain cancer leads in childhood cancer incidents and deaths. For the second most common brain tumor in children, DIPG or Diffuse Intrinsic Pontine Glioma, the worst of the worst. The one which is responsible for more brain tumor deaths in children than any other. The same standard treatment protocol and terminal prognosis exists today as in 1962 when Neil Armstrong's daughter tragically died of the disease. It's still a death sentence, and knowledge of this tumor cannot help but inspire activity and resolve for a cure. The deaths are as horrific as they are tragic.</p>
<p>In 2021, parents should not still be told that to the medical research investment culture in place, there children's lives just aren't numerous enough to matter. In order to explain the lack of solutions and the fact that there is no where on Earth you can take your child to save them from DIPG.</p>
<p>When Keith and Brooke Desserich found out that their beautiful daughter, Elena, had DIPG, there were no dedicated trials, no networks, no information, and no parent groups. Elena's story was the first public case of DIPG. Ultimately becoming the subject of a bestselling book titled, "Notes Left Behind" that was published in 22 languages and forming the basis for what is now around 16 million in funded DIPG research with millions more now spent annually.</p>
<p>After Elena's death in 2007, they created The Cure Starts Now foundation, the largest DIPG and DMG research charity with 40 locations in the United States, Australia, and Canada. They also founded the DIPG Collaborative, coordinating the efforts of another 25 independent DIPG centric charities. They created a major symposium with six conferences held, drawing together over 400 experts at each meeting, and they also helped develop the International DIPG / DMG Registry, the SIOPE DIPG Registry, the Connect Consortium, and the informational web resource of <a href="https://www.dipg.org/" title="DIPG.org">DIPG.org</a> and <a href="https://www.medulloblastoma.org/" title="medulloblastoma.org">medulloblastoma.org</a>. Medulloblastoma leads in childhood brain cancer incidence. It's the most common brain tumor in children.</p>
<p>When I usually come on this show and say that 95% of the research funding for pediatric brain cancer's funded by parents and parent led foundations, I would feel comfortable guessing that a significant portion of that comes directly from The Cure Starts Now network of organizations in some major way.</p>
<p>Keith and Brooke have two other children in addition to running The Cure Starts Now, and they're established entrepreneurs with history of creating or owning several other businesses. And now I am honored to introduce you to Keith Desserich to the show.</p>
<p>Welcome Keith. I'm so glad you're here with me today.</p>
<p><strong>Keith Desserich:</strong><em><strong><br></strong></em>Thank you. Normally the biggest title I always end up getting is just I'm Brooke's husband and Elena's father. That's about as far as anybody ever knows me, and I'm happy with it. That's the best way.</p>
<p><strong>Janet Demeter:<br></strong>I'm so glad you're here with us. Thank you, Keith, for agreeing to come on and tell us about what's happening with The Cure Starts Now in 2021. How things have changed? I mean, my gosh, you were really at the forefront of the beginning of so much activity. I'll just let our listeners know that in 2012, after my son had died, actually we just moved into 2013 I think was when I first found The Cure Starts Now and I called you. It was like, "Oh my gosh, I can't believe this is here." Because when my son was diagnosed in 2011, it was still the attitude was like, "Well, it's so rare. It's like you've been hit by lightning twice. That's why there's nothing. That's why he's going to die, and there's nothing you can do." I really see that we are getting very close. We're like on the cusp of finding actual therapies that are going to change outcomes for these kids.</p>
<p><strong>Keith Desserich:<br></strong>Absolutely are. That's the thing is that people will ask, "Why do you do this? Why in the world do you ever want to go ahead and focus on research? And do you think a cure will ever be found?" The answer is absolutely we think a cure can be found. Why would we do this otherwise? Because you don't enter into something and say it's impossible and I can't accomplish it. We can accomplish it, and you're exactly right. I mean, things have changed. Unfortunately, a lot of things also stay the same too.</p>
<p>When you go back and you look at it, when our daughter was diagnosed, we were told that she would only live 135 days. That was kind of where we started, and that's what "Notes Left Behind" was about us going, we have 135 days to pass on everything we know about our oldest to our youngest who's only three at the time. So we started writing these things down, and this was before blogs, this was before Facebook, this was before Twitter, which seems like decades ago, but really it was only 13 years ago.</p>
<p>We started writing this, and it got bigger. I didn't even know what a blog was, and people found it. I was just using it because I didn't know and I wasn't calling my family. So it just kind of grew and grew and grew, and ultimately we've lost Elena. But what ended up happening is there was a cause that was built, and my wife and I looked at each other and went, "All right. Let's see if we can find somebody that has already done it." And we went out and looked, and there was nothing. I think that's what leads to really that impetus to really want to change things, to want to do something, to want to actually cure this.</p>
<p>We noticed a couple of things. Number one, that medicine and medical science and research fundamentally wasn't structured right, and we noticed also that there was really no crusader for these kids. Everybody just regarded them as kind of a lost causes. By the way, that's happened before. You go back to leukemia and you go back to the early '30s, '40s, and they regarded those kids as lost causes. They would say, "We should kind of keep them in a basement so nobody can really see them and the plight and ignore them and just make them comfortable." A person was strong enough to stand up and say, "No, these are actually the future of cancer research. We need to focus on this, and with it, we're going to find a cure for them all." That person was named Dr. Sidney Farber. What he did was he revolutionized everything you know about cancer and gave us another way to fight it, a fourth way to fight it or a third way to fight it, depending upon where you look at it. That's where we're at right now.</p>
<p>You talk about Armstrong. You talk about how this has been around for a long time, but this is our very first steps. This is where we're actually going to conquer cancer, and we call that the Homerun Cure.</p>
<p><strong>Janet Demeter:<br></strong>I love it. I love it. I remember when I first discovered you guys, I couldn't believe it. It was like a dream come true after having felt so alone, and I often tell my friends if I hadn't already, when I contacted you, if I hadn't already started a thing for my own 501(c)(3), I absolutely would've been a chapter. I still kind of regret not having been able to come under that banner. I've just watched all of these chapters that have grown up and not only advances that you've funded or helped fund, but also just innovations in how we do research and how we're qualifying and categorizing these tumors as well. You guys have been integral to that whole process it seems.</p>
<p><strong>Keith Desserich:<br></strong>Well, I think what we are is we're very good at asking questions, and I think that's what we really wanted to focus on is taking a new focus on it. The problem with it is that we tend to look at things and say, "I'm going to guess that this is going to cure this cancer." We make assumptions, and our researchers are making assumptions based upon limited funds, based upon limited timeframe, and they're trying to be able to cure it on that. That's really where it starts. You have to be able to walk into you, and you have to be able to get information, like some of the sources that you talked about. The Gabriella Miller Act and everything else. It's a wealth of information that's really going to move this needle.</p>
<p><strong>Janet Demeter:<br></strong>Absolutely. I did want to ask you a little bit about Elena and just what the experience was like back then, and also, what year was The Cure Starts Now founded? Was it immediately after she died?</p>
<p><strong>Keith Desserich:<br></strong>It was actually brought up by the community. Our Cincinnati area here went ahead and created the charity even before. We weren't part of it in the very beginning of it, and it just kind of took further and further.</p>
<p><strong>Janet Demeter:<br></strong>Could you tell us a little bit more about how the Homerun Cure is evolving and these new ways and different concepts in funding are coming into play?</p>
<p><strong>Keith Desserich:<br></strong>Well just taking Homerun Cure for the very beginning of this, the charity was actually built by others. We kind of joined a little bit later on it, but it was built on a very simple journal entry at that time. Remember, at that point, DIPG was basically a two sentence section of a giant 1200 page manual on oncology. It was nothing. But the two sentences were something to the extent of that many researchers believe that if we can find a cure for this, we might be able to change the way we fight other cancers. And that seemed like the most important group of sentences I had ever seen in those books. So that really struck me at the beginning, and I reached out to several doctors and said, "Does anybody really believe this?" And what I found out was that they all did. They all felt that DIPG forced them to try new things. It forced them to not simply rely upon treatments that didn't work in this category, and it forced them not to tweak their way to treatments but effectively create a cure.</p>
<p>I called that the Homerun Cure, and that night, instead of writing about Elena, I sat down and I wrote about this idea that maybe we were curing cancer wrong. I ended that journal with the words, "The cure starts now." That's where it came from. That's where the name came from. People started writing checks to The Cure Starts Now. My wife called me up and said, "Who is The Cure Starts Now? What did you do now?" I believe was her words. I said, "I don't know." I didn't even know where it was coming from. I had to go back and read it. I went, "Oh, okay. I guess it came from the last words."</p>
<p>We didn't want to build this. We really didn't want to create an empire or a charity, and I think that's kind of where you have to start. If you want to do this and this is something you want to do, even in Elena's name or something like that, that's noble, but we just felt that it needed to take an identity of its own because clearly it already had. Today, we're the only homerun cancer charity really out there and that's scary because what it means is that we are fighting cancer according to the numbers. We throw the most amount of dollars at those cancers that most people get the most number of diagnoses. That makes you feel good, but at the end of the day, it doesn't improve the science. How we're going to beat cancer isn't by throwing money at the ones that it effects the most. We're going to cure cancer by throwing money at those that we believe we can learn the most from.</p>
<p>DIPG, pediatric brain tumors, medulloblastoma really have a unique opportunity to really change the face of every cancer that's out there, and we've seen that. We talk about this histone mutations that were discovered. Well, that came from one of the trials that we funded, and what that was is the idea that some of these levels were actually present not only in DIPG but maybe they're in other cancers. And we're starting to see some of that. We're already seeing the beginning of kind of that homerun strategy.</p>
<p>I guess that's Cure Starts Now. We have three things that we focus on. Number one is the homerun strategy. Number two is we focus on don't do things that other people do better. So if another charity or another foundation's already doing one of those areas, we'll focus on something else because it really takes a partnership. We have to work together. We don't want to build that empire. And the last thing that we do is fund research entirely different ways and to really take a business type of model opposed to just doing it the same way that we were and just throwing money at it.</p>
<p><strong>Janet Demeter:</strong><br>Well, tell us about that. I want to hear more about the business model and how it's evolved over time.</p>
<p><strong>Keith Desserich:<br></strong>Well, we looked at it and said we tend to look at things, and this just came from our medical advisory council. They said, "You need to look at grants and say let's focus on those grants that can only be done in a year. Let's focus on those grants that you can only do for 100,000." That was it. That was mainly taken for kind of an NIH model to it. The problem with it is that it really doesn't allow you to stretch out your ideas.</p>
<p>There's also weakness that a lot of charities, and frankly, we're leading the research. We're responsible even more sometimes than the researchers for these mistakes. But we tend to fund things in what I consider kind of three buckets. One of which is what I call identity funding, and that's where you want to fund something that affected your child or a doctor that treated your child or even at a local institution where you're based. That feels good, and that's nice to see it. It really brings cause to your child's name, and it helps that. At the end of the day, it may not be necessarily as effective of a way to be able to find a cure though because what maybe close to home may not be what is the best research out there.</p>
<p>The second thing that I think we as family foundations are doing wrong here is we tend to do also one-off funding. We look at things and say, "That's a neat idea." We fund the translational research or the test tube mouse model element of it. Then we just kind of let it go. We never really looked to the future and say, "Well, if this works, what are we going to do? If this doesn't work, what are we going to do?" We just simply say, "We're going to fund one and we're done." Think of it as if you're running a relay race, and all you're doing is you're setting up your first runner and they have a baton and it goes absolutely nowhere. It doesn't matter whether you ran that first leg. It matters whether you finished the race. So we looked at that also and said, "We don't want to do that. We don't want to make that same mistake."</p>
<p>The last and final way that I see that people are funding out there is what we call bounty funding. That's where you go out there and you say, "I'm going to put up a bounty of a million, a hundred, $200,000, if people can get together and maybe find out an answer to this." That's kind of like both of the previous two. In a lot of cases, there is no generational plan setup on it and it typically is focused on whatever's the best of the best. It doesn't really find good research, and sometimes even funds bad research. That was kind of your breakthrough saying, "We just really got to focus on it in different ways and really not try to make those same mistakes."</p>
<p><strong>Janet Demeter:<br></strong>Well, yeah. And especially because the trends now necessarily so is to more collaboration between entities and the de-siloing of things because we have more limited data pools in multiple places we have to share. I like the explanation you gave, the analogy of passing the baton because really that's what research is. I mean, honestly, science moving forward.</p>
<p><strong>Keith Desserich:<br></strong>You go to these meetings, and you have a really great project that's presented that's translational. They're just doing it on a chemical level, and they're presenting this idea. And everybody goes, "Oh, wow. That's wonderful idea." But they're depending upon a clinician to actually pick it up and turn it into something else. Typically, they're not at the same institution. They're not already talking to each other. So we're really depending upon the chance that somebody's in the room. They didn't go to the bathroom. They weren't up grabbing lunch at the time, and they weren't engaged in the email they were reading. And they were paying attention. Not to mention the fact that they even bothered to attend the session in the first place.</p>
<p>Then they have to go get the funding by the way afterwards. Well, typically of your grants, one out of 16 grant opportunities actually get funded. So your chances are already low to begin with. Now you throw all those other variables in it, and I'd be surprised if we are actually taking one out of every 100 good ideas and taking them anywhere. You just can't do that and try to be able to cure cancer. That's wasting money.</p>
<p>That's why when we do it, we look at it and we say, "All right. Let's do it generationally." If we're going to fund research, we want to know if this works, let's not only kind of say, "All right. What are we going to do next?" But let's then also set up the next researcher. I want to find that clinician that is interested in the translational research even before that translational research has started. That's kind of what the symposium became. We went out and actually tried to put them two together. Granted, it never really went to the clinical mode if it wasn't successful. But even if it wasn't successful, well let's dive deeper and figure out why it wasn't successful because we don't want to make the same mistakes twice. Did we go and look at some of the biopsy information? Did we look at it and say, "Okay. Did we have the wrong assumption? Do we maybe want to tweak it? Are we doing any kind of reconciliation of our ideas to be able to advance it?"</p>
<p>It's a business model. When we go into it, we tend to look at it and say, "We want to focus on letting a business model dictate this. We want to base it upon information. We really want to advance it." I think that's something we can talk about as well is the whole idea of this data model. What you talked about at the beginning of the show with the Gabriella Miller Act, Kids First Act, the DIPG Registry, that really has the biggest chance of really changing the way we fight cancer in general.<strong></strong></p>
<p><strong>Janet Demeter:<br></strong>Absolutely. The way we do research and prioritizing the pediatric research because it gives so much. Whereas the converse isn't true all the time when we can't always translate a therapy for something going on in adults for a correlative in children. It doesn't always work so well, but pediatric research is just literal gold mine of information and innovation and things that really stretches our science because these are areas that just haven't been touched.</p>
<p><strong>Keith Desserich:<br></strong>Oh, exactly. I mean, pediatric brain cancer is one of the most aggressive forms of cancer. It's resistant to chemotherapy. It's difficult to remove. It forces us to fight with new technology and new thinking, and if you look historically, it's where we've made every advance almost in cancer has come from these types of realms.</p>
<p><strong>Janet Demeter: <br></strong>That's amazing.</p>
<p><strong>Keith Desserich:<br></strong>Why are we doing anything else?</p>
<p><strong>Janet Demeter:<br></strong>Right. Well, I'm so glad you agree. When we come back, we're going to talk a little bit more about those programs and pediatric brain cancer and the importance of awareness.</p>
<hr>
<p>We're back with Childhood Cancer Talk Radio where kids come first for the cure. I'm Janet Demeter, your host, and it's halftime. You know what that means. It's time for your advocacy report. Today we're having a moving advocacy report all this entire show because I'm fortunate here to be talking with Keith Desserich. He's CEO of The Cure Starts Now Foundation, one of the world's really greatest charities for funding pediatric brain cancer research and for innovation in the space and growth in the space. It's all proceeded by awareness and outreach. As Keith was telling us in the top of the show, there was nothing when his daughter was diagnosed in 2007 or maybe she was diagnosed before that. I don't know how long... How long did Elena last for you? How long did you have with her?</p>
<p><strong>Keith Desserich:<br></strong>256 days.<strong><br></strong><strong></strong></p>
<p><strong>Janet Demeter: <br></strong>Okay. So twice as long as they gave. Wow.</p>
<p><strong>Keith Desserich:<br></strong>Twice as long. It shows us that we didn't know anything too, but the good news is that the survival time's now, we're getting close to about 20 months now.</p>
<p><strong>Janet Demeter: <br></strong>If you can get on one of those trials, right?</p>
<p><strong>Keith Desserich:<br></strong>It really is key on parents getting information too. We talk about not only information about research, we need to have information for parents.</p>
<p><strong>Janet Demeter:<br></strong>Absolutely. That is key. I just wanted to dovetail back onto the Gabriella Miller Kids First Research Act was first signed into law by President Obama in 2014, and it established this database of pediatric disease genetic information, a network that they've built and NIH funded at NIH, and this year they're putting another bill through to source another area of funding for it. Wouldn't come from taxpayers actually. It would come from a pharmaceutical penalty fund that isn't being used for anything else. So that would just go back to the treasury. It's not being taken away from anyone or repurposed of anything. It's just sitting there. It's actually quite a bit of funding. I think it's funny that pharmaceutical companies would rather gain penalties than invest sometimes than invest in our kids. It's like a very poetic kind of justice that their penalty money will be funding this amazing project. We're hoping if the bill gets through.</p>
<p>In 2014, Gabriella was one of our biggest childhood cancer advocates, and she just happened to capture the attention of the House Speaker at the time, Eric Cantor and ended up being the face for this bill that they had not being going anywhere in the House for a long time because of this movement that really the CureFest began in 2013 I guess was their first more official one. The movement for childhood cancer awareness began a long time, but it just really accelerated at that time. A lot of these advocates pushing for awareness have been... I just myself found DIPG to be just a great ambassador for childhood cancer because it's so horrific. It's been in the dark for so long.</p>
<p><strong>Keith Desserich:<br></strong>It's also small enough that we don't have an ability to not cooperate. If we're going to advance this, we actually have to. That's where it really is truly the leader I think cancer needs because in other forms, you don't have to work together. In this, we don't get statistical relevance on any type of study unless we work together. That's kind of been the mantra with it. You got, for example, what Gabriella Miller, her family did is to really kind of pave the way for that to be indoctrinated into our government, to have that support, to build that foundation for it. Just absolutely wonderful things. You have organizations like PNOC, PBTC that are now starting to use that and starting to use that foundation.</p>
<p>I think there's still a role particularly for the DIPG community to play though in terms of making sure that we are capturing the right data. I think sometimes we may not be capturing the right data. We tend to capture data just for the sake of capturing data, and we think it's a really good idea. But it's almost important for us to look and see are we collecting link data? Are we collecting kind of one-off data that comes from research? That way we can use it for the future.</p>
<p>What the difference is that when somebody goes and the research does a trial, they collect information. Let's say they're only collecting... They're doing a study that's primarily based upon gender and incidence. If that's the case, they're only going to collect data on gender and incidence. They're not going to collect necessarily biopsies. They're not necessarily going to collect family histories, none of that. Another researcher goes out and does a study that maybe focused on let's say gender and location. But they're only going to collect data on those two things. Each one of these is limited studies. Well, we take that. We throw it in the same database and say, "We have data all on these patients." The problem is these patients don't intersect. They're totally separate groups of patients taken probably at different times.</p>
<p>The conclusions we make between them while sometimes are right, are also sometimes wrong. What a link database is where you're organically collecting information, where you go into it and say, "Let's put together a list of every question we ever wanted to know about this cancer diagnosis. Family history, genetics, tissue, you name it." And this is what started with the international registry, DIPG Registry. And we came up with I believe it's 640 or 630 questions. Now one of those questions is the entire genetic mapping of DIPG. That's a big one. The other one is a family genetic history. So you're talking out of 630, it's more like hundreds of thousands of data points. But if you can collect that on every single patient that gets through that, imagine the massive information, and you can make conclusions on that that will not only just kind of give you guts checks as to what is the drug that you want to try. It'll actually identify mutations. And really dig it down to a low, low level. That's what I think we have to get ourselves to.</p>
<p>We have a system now with these data initiatives that have really changed the way we do things. The only thing we really got to do is we got to focus on the ground game. We got to focus on collecting the information organically with it. And if we can do that, man, PNOC, PBTC, even CONNECT are great vehicles to really take this and to turn them into active trials.</p>
<p>That brings me to the other part that you were talking about. You talk about pharmaceutical participation. When all of a sudden you have data and you have data that identifies the mutations, the pharmaceutical companies come to you. They want to invest in pediatric brain cancer, and that's what we're finding with this consortium that we built called CONNECT. We built it on the back of the International DIPG Registry, which between that and science, 1400 DIPG patients, the biggest of anything out there. When all of a sudden you have that data and you can find the mutations, we have just to give you an idea of Connect. We threw in I think it's $2.7 million to start it. Well, today principally pharmaceutical cooperation has thrown in almost another $8 million. We're getting that. It's just a matter of we got to build the system first because they're not going to have the vision or necessarily the patients to kind of go through that route.</p>
<p><strong>Janet Demeter:<br></strong>Now I know that depending on circumstances of death, which is never nice to think about, but some kids if they have their tumors preserved are in... They don't have cell lines growing, and I'm just wondering with the DIPG Registry, does it really matter? Can you still submit data that's helpful, even if it's in a wax base? Can you still access the genetic material?</p>
<p><strong>Keith Desserich:<br></strong>Absolutely. There’re capture rates for that. It's also shared between 114 hospitals.</p>
<p><strong>Janet Demeter:<br></strong>Because I want to do that. I really want to do that with my son's tumor. We weren't able to. We had strange circumstances around his death with communication issues and stuff with the hospital. It was always really tragic to me. I really want his little tumor to help.</p>
<p><strong>Keith Desserich:<br></strong>It does. It does. Those help more than you can imagine because, by the way, that can be signed up by parents. You don't have to be a doctor to do it. So a parent can simply go to <a href="https://dipgregistry.org" target="_blank" rel="noopener">DIPGregistry.org</a>. They can sign up for it right then and there. Sometimes we do get parents that are signing up for their children that have already passed. We still collect that information. Whatever we can collect, we try to fulfill all of the 600 and some odd questions we have to try to get that. And this is run by the researchers, the principal investigator on this is Dr. Maryam Fouladi. She was the one that took the vision, the leap of faith and said, "All right. I'll give this a shot. I think we can do it." We threw our funding in. I think the thing's cost... I think we put in about $4 or $5 million at this point. But, we have lots of those. If you can collect that and you can start to identify mutations, I mean, you are going to get participation. We're going to get cooperation, but it really starts with that data.</p>
<p>The other thing that we haven't talked about is also parents. You talk about the information, but I don't know about your situation. But I know in mine, there was nothing out there. So even us as parents had nothing to rely upon at that point.</p>
<p><strong>Janet Demeter:<br></strong>I love that Swifty Foundation that really helps educate parents so that when they will have to prepare. I mean, it's a horrible thing to have to think about, but in this area of cancer, it's really important because still with DIPG, really most all of them die. It's very few that get to grow up all the way, and it's a reality. It's so helpful. It can save kids in the future. We're going to take one last break, and when we come back, let's just devote this last period of...You guys do so much for the parents, and there's a new group that you all have put together called the <a href="https://dipgwarrior.org">DIPG Warriors</a>. I'm hopeful that we can talk about that as well.</p>
<p>Also, I wanted to skip back and let our listeners know a little bit backstory about watching PNOC become this amazing organization that's still very early in its growth, but so much of it is because of your support.</p>
<p>We were also talking about the way things were. One of the things we really want to cover in this last segment is to let you know about all the resources that this amazing organization provides parents with, and that is the key. Where do you go? What do you do? There's all sorts of resources that The Cure Starts Now and its affiliates help parents find what they need, but Keith, oh my gosh, when I was in the hospital with Jack in 2011, everyone came around with one of these giant binders for childhood cancer people. I didn't need any of it. None of it helped me. Giant binder, no help. Totally lost. What the heck is this for? Oh, your kid's just going to die. There's nothing you can do.</p>
<p><strong>Keith Desserich:<br></strong>The binder was designed to give us information, but it was intimidating. I have my binder sitting on my bookshelf in my office here. I don't think I've read cover-to-cover, but that's the way it was. Back then when you had a trial, you had to read it. You would hopefully print if you could find a computer to do so. And then you would get on the phone and you would call and see if the trial was open. Now that was if a trial was even there. Today, there's lots of trials there. Matter of fact, if you go online, if you look it up, you even find clinical trials, maybe 40 or 50 of them. You can find probably over 100 trials out there for even DIPG alone. But you got to know how to look. And what we wanted to do, knowing about this binder, is we wanted to create a way that parents don't have to do that work and it doesn't make it intimidating.</p>
<p>We went ahead and created two websites for two types of categories right now. Hopefully two more. But DIPG.org and medulloblastoma.org. Very easy to remember. But these websites not only give you information that comes from experts. We've actually went out and found the best experts in oncology and had them write the chapters for us. It's kind of lie a book online. We also put a trial finder. So you can go there. You give your email address. It's all just going to families. Australian trials, European trials, North American trials and Canadian trials. It just comes to your box. Anytime a trial changes, and they do. They open and they close. This happens. You will actually get the information, sometimes even sooner than the doctors. We have a lot of doctors that actually subscribe to this list, and that's how they educate their families. Well, more importantly, we want you to have the information first. So just DIPG.org and medulloblastoma.org.</p>
<p>I'd also probably should also represent too with DIPG.org, if you know the book that American Childhood Cancer Organization put out. They went ahead and offered that content as well to be posted there in an online format. So, all of that, basically everything we know about these diseases are all right there.</p>
<p><strong>Janet Demeter:<br></strong>It's amazing you were saying just due to developments and some more hopeful and helpful clinical trials of the last few years that the kids are living longer. I said, "Yes, if you can get on that trial." If you can get on that trial because the standard treatment for a lot of these tumors, especially DIPG, is still radiation and palliative care. This resource is so helpful, Keith. It literally can make the difference between having some extra time with their child.<strong></strong></p>
<p><strong>Keith Desserich:<br></strong>You'll know about it before anybody else. Right now doing a search today, it's a little different today, but there are 65 clinical trials across 16 countries. It's already categorized for it. By the way, we don't filter them. It's all there. When you click on it, you can actually go into the links and find out. You may be the first one to know of this trial before anybody else. A lot of people go into their doctors. They print out the sheet, walk in or just show them on their phone, and the doctor goes, "Oh. I didn't know that that trial was even open. Yeah, that would be a great one."</p>
<p>That's the whole thing. We're trying to put the power of information in the parent's hands. That's really kind of what that is. The same thing goes with what you referenced about the DIPG Warrior program.<strong></strong></p>
<p><strong>Janet Demeter:<br></strong>Tell me about that because I know it's special for families that are in the fight right now, right?<strong><br></strong></p>
<p><strong>Keith Desserich:<br></strong>It is. It was something that actually came from the families. They said, "The Cure Starts Now, you guys do a really good job about research. But we would like to kind of unify together as just families and warrior families," that's kind of what they termed themselves. Ultimately, we looked at it and said, "All right. Is anybody doing this?" No, nobody was doing it. Okay. I guess it needs to be done. We have to kind of reconcile that because once again, we're not about empire building.</p>
<p>At the end of the day, it was a really great idea. It turned into a program that today when a DIPG or Medulloblastoma family is diagnosed, they can get a package of free shirts that they then can sell to try to do fundraising for cancer research. They get arm bands because everybody's got those jelly arm bands. Tons of them. They get that too with their child's name and their child's name on the shirt and all that. And then it goes towards research. That's what the program benefits. Now beyond that though, they also really wanted to talk to each other, and they wanted to talk just to each other. They didn't want to have their comments broadcast. They wanted to have a closed group where they're just talking to other families that are in the fight. We held back on that for a while because, frankly, I'm not sure we're terribly great at groups like that. I'm not sure that's necessarily our specialty in that regard. But they kept pushing, and it came from, ironically, our 100 Family Strong event. They kept pushing again on this and wanted to do it. We just started that as well to allow families to talk honestly to themselves, no filters, no moderation. Just don't beat up on each other, that's it. We want them to actually choose what subjects and what they want to talk about in the privacy of that group. It's been a really good thing on Facebook. It's under <a href="https://www.facebook.com/groups/dipgwarriors" target="_blank" rel="noopener">DIPG Support Group For Families</a>.</p>
<p><strong>Janet Demeter:<br></strong>When you empower families like that, you bring hope. Just from that gesture in and of itself, and the only reason why we've had so much forward progress with awareness for pediatric brain cancer because most people don't know how prevalent it is. They don't realize how deadly it is. They don't realize how much suffering and death goes on over and over and over again when we could be doing more, but the way our medical research investment culture is structured, we need more wake up calls. But if it weren't for Cure Starts Now families, I have called on so many families in supporting our National DIPG Awareness Resolution.</p>
<p><strong>Keith Desserich:<br></strong>We've got 40 locations now I think. Hopefully it can help.</p>
<p><strong>Janet Demeter:<br></strong>Now yes, they are truly the rock stars at the state level on getting their states to honor DIPG Awareness Day. I'm telling you they've also been amazing in supporting our national resolution, which has been hard for us to raise awareness for even in our own community because we got the little bill that could. It really kind of acts as an ambassador for childhood cancer. With the horrific example of DIPG demonstrates how neglected this space is really and how we've just really allowed these deaths to become somehow acceptable because of their smaller numbers of our patient population. But again, it raises awareness for the prevalence and the deaths and also it asks that pediatric and high mortality rate cancers be given greater consideration in the research grant process, especially with our government funds. It's really an attempt to not only educate the public and Congress, but to really push home that point that we need to say yes more to things that increase pediatric cancer research funding and research collaboration capability.<strong></strong></p>
<p><strong>Keith Desserich:<br></strong>It's going to come from parents, and you're exactly right. People know what they want to do. They just don't know how to do it or what's the vehicle to do it. That's been one of the things that we notice is they come to us. I mean, the chapters kind of come to us and say, "We want to do this. We want to take it in this direction to it." And I'll power for it. We just don't want to make the same mistakes. The only thing we know is what we've done that hasn't worked. Beyond that, our chapters make up their own kind of future and how they want to focus on it. And that's beautiful. We love that.</p>
<p>Same thing also with for example, like the DIPG Collaborative. That's a group of 25 foundations other than Cure Starts Now who have their own guidelines, thought processes, directions. We exert no control over that. But when you put everything together, you have 26 foundations coming together to fund research in a collaborative manner so that we don't duplicate each other, and you have 40 chapters that are already doing that as well. That's 70-some odd families in DIPG, and that's really just unheard of. It works for advocacy. It works for the awareness it builds. It works just for funding research as a whole.</p>
<p><strong>Janet Demeter:<br></strong>I can always look up and find a chapter in this state and call on someone. They're like, "Yes," because they're hopeful because of the vision that you maintain with your organizations of we've got this. We're going to get this. Why not? This is why we're doing it. And a Homerun Cure has been so instrumental to that.</p>
<p><strong>Keith Desserich:<br></strong>And we talk about that, but we also talk about, for example, that 100 Family Strong. The whole idea of the Warrior program.</p>
<p>100 Family Strong is an event every single year. We find 100 families that want to help fund research and focus a day just on their child. This year alone we went ahead and did it, started 100 days away from the end of the year. We had 207 families that participated, and that's a lot. It's really good research fundraising. That's one of the things that people who are listening to this can help us with too is help us to talk about these kids, help us to put their word out because all of that helps research. They can simply go to Cure Starts Now and go to 100 Family Strong, and you can see them. You get to see all the faces of the families that are really pushing to make this successful.</p>
<p><strong>Janet Demeter:<br></strong><a href="/" title="thecurestartsnow.org">TheCureStartsNow.org</a>. You can find links to pretty much any of this stuff. But also, remember, DIPG.org and medulloblastoma.org. Keith, I cannot think you enough for coming on today. You're one of my heroes in the community, and it's just an honor to be able to chat with you.<strong></strong><strong></strong></p>
<p><strong>Keith Desserich:<br></strong>I appreciate it. Between the two of us, I'd say, unfortunately, we pre-date most of the folks out there right now.<strong><br></strong><strong></strong></p>
<p><strong>Janet Demeter:<br></strong>I hope you come back again. I can't thank you enough. God bless you and good luck this year.</p> https://thecurestartsnow.org/news/childhood-cancer-talk-radio-with-janet-demeter-featuring-the-cure-starts-now-s-keith-desserich/ Tue, 09 Feb 2021 09:15:43 -0500 https://thecurestartsnow.org/9791 Kansas City Chiefs Quarterback Raises $8,100 for The Cure Starts Now <p><strong>Patrick Mahomes charity, <a href="https://www.15andthemahomies.org/" target="_blank" rel="noopener">15 and the Mahomies Foundation</a>, makes donation in honor of Whitney Wells’ battle with DIPG</strong></p>
<p>CINCINNATI -- The Cure Starts Now announced on Friday that they have graciously received a donation of $8,100 from 15 and the Mahomies Foundation, the charity of Kansas City Chiefs quarterback, Patrick Mahomes, in honor of Whitney Wells, a courageous little girl who befriended Mahomes during her battle with <a href="https://www.dipg.org/facts/what-is-dipg/" title="What is DIPG">Diffuse Intrinsic Pontine Glioma (DIPG)</a>.</p>
<p>Wells was diagnosed with DIPG, a highly aggressive and fast-growing form of brain cancer, shortly after her 10th birthday in May of 2019. Her relationship with Mahomes and other Chiefs players and staff began later that summer at Kansas City Chiefs Training Camp. There, she gave Mahomes her powder blue fundraising bracelet with “Whitney Wells” and “You got this!” written on it in baby pink. He wore the wristband all season long on his throwing arm en route to his Super Bowl LIV and MVP victories that very season.</p>
<figure><img alt="" src="/media/3855/wells-bracelet_name.jpg"></figure>
<p>Mahomes’ gesture of wearing her bracelet brightened Wells’ spirit at a time when she needed it the most. She watched every game she could to see his tremendous display of support. Sadly, Wells was unable to see her beloved Chiefs win that season’s Super Bowl, tragically passing away on December 30, 2019, just over seven months after her diagnosis.</p>
<p>On Dec. 15, 2019, in Week 15 of the NFL season, Mahomes revealed powder blue cleats with baby pink Adidas stripes as part of the NFL’s “My Cause My Cleats” initiative that loosens restrictions to allow players to wear custom footwear in support of charities of their choosing. Mahomes, in partnership with Adidas, designed the cleats to match Wells’ wristband. The footwear raised $8,100 through the My Cause My Cleats auction, with the money going to 15 and the Mahomies Foundation and was later donated to the charity of Wells’ choice.</p>
<p>When approached by Mahomes’ marketing representative, Scott and Tara Wells, Whitney’s parents, said they wanted the proceeds of the cleat auction honoring their daughter to go to The Cure Starts Now. Tara Wells stated, “We feel a real obligation to help find a cure for DIPG. Too many families are traumatized by this terrible disease. We pray daily for all DIPG kids and families affected.”</p>
<blockquote>
<p><em>“We are incredibly grateful to receive this generous donation from 15 and Mahomies in Whitney’s honor. It means a great deal and will allow us to continue funding the DIPG Registry, which provides a huge source of support for kids like Whitney.”</em> - Brooke Desserich, Executive Director of The Cure Starts Now</p>
</blockquote>
<figure><img alt="" src="/media/3852/mahomes-cleats.jpg">
<figcaption>Photo credit: NFL Auction, My Cause My Cleats</figcaption>
</figure>
<p>In a statement from 15 and the Mahomies Foundation, Executive Director Marques Fitch stated, “We wanted to bring some attention to Whitney Wells and her determination! The 15 and the Mahomies Foundation is honored to support The Cure Starts Now and their efforts to create resources and support for kids and families dealing with DIPG.”</p>
<p>As Mahomes and the Chiefs gear up for their back-to-back Super Bowl appearance, this time facing off against the Tampa Bay Buccaneers, the Kansas City quarterback continues to wear Wells’ “You got this!” bracelet, a fitting reminder of all that he has accomplished and all that he will continue to achieve as his historic career moves forward.<br><br>To get involved, please consider making a donation here: <a href="https://www.facebook.com/donate/223463662752194/" target="_blank" rel="noopener">https://www.facebook.com/donate/223463662752194/</a></p>
<p><em><u> </u></em></p>
<p><strong>About The Cure Starts Now</strong><u><br></u>The Cure Starts Now was started in honor of 6-year-old Elena Desserich, a Cincinnati girl who battled a rare, aggressive form of brain cancer known as DIPG. Today, The Cure Starts Now Foundation has over 40 locations in three countries and is the only cancer foundation dedicated to finding the Homerun Cure™ for cancer by focusing on one of the rarest, most aggressive forms of cancer. Believing in more than just awareness, The Cure Starts Now has funded over $16.4 million in cancer research in partnership with the DIPG Collaborative. This includes 100+ cutting edge research grants at over 100 hospitals in 15 countries since 2007. Learn more about The Cure Starts Now and their mission to find the Homerun Cure™ for cancer at <a href="http://www.thecurestartsnow.org">www.thecurestartsnow.org</a>, and follow <a href="http://www.facebook.com/TheCureStartsNow/">www.facebook.com/TheCureStartsNow/</a> for updates.</p> https://thecurestartsnow.org/news/kansas-city-chiefs-quarterback-raises-8-100-for-the-cure-starts-now/ Thu, 04 Feb 2021 11:30:27 -0500 https://thecurestartsnow.org/9781 Research Update: A Pilot Radiogenomic Study of DIPG Reveals Distinct Subgroups With Unique Clinical Trajectories and Therapeutic Targets <p><em><a href="/research/research-and-grants/cincinnati-childrens-hospital-medical-center-2015-02-23/" title="Cincinnati Children's Hospital Medical Center: 2015-02-23">This project was approved for funding</a> by the DIPG/DMG Collaborative and The Cure Starts Now and here are the results:</em></p>
<h4 class="article-title">Quote from Dr. Rachid Drissi:</h4>
<p><em>“This is the first study to apply an approach combining magnetic resonance imaging (MRI) features and genomics in patients with DIPG in order to (1) investigate relationships between MRI characteristics at post-radiotherapy time points with tumor molecular profiles identified through extensive genome-wide sequencing analyses, and (2) further explore the radiographic, clinical, and biological heterogeneity of this disease. This study has begun elucidating relationships between post-radiotherapy radiographic response with DIPG molecular profiles, revealing radiogenomically distinct subgroups with unique clinical trajectories and therapeutic targets.</em></p>
<p><em>We are very aware of the fact that without the support of the foundations like yours, not much can be achieved. Thank you again for the long-standing support which achieves two important things: raising the awareness and providing the research support. As a scientist, this exactly what I need to do my research.”</em></p>
<h4 class="article-title"><br>Abstract</h4>
<p><span>An adequate understanding of the relationships between radiographic and genomic features in diffuse intrinsic pontine glioma (DIPG) is essential, especially in the absence of universal biopsy, to further characterize the molecular heterogeneity of this disease and determine which patients are most likely to respond to biologically-driven therapies. Here, a radiogenomics analytic approach was applied to a cohort of 28 patients with DIPG. Tumor size and imaging characteristics from all available serial MRIs were evaluated by a neuro-radiologist, and patients were divided into three radiographic response groups (partial response [PR], stable disease [SD], progressive disease [PD]) based on MRI within 2 months of radiotherapy (RT) completion. Whole genome and RNA sequencing were performed on autopsy tumor specimens. We report several key, therapeutically-relevant findings: (1) Certain radiologic features on first and subsequent post-RT MRIs are associated with worse overall survival, including PD following irradiation as well as present, new, and/or increasing peripheral ring enhancement, necrosis, and diffusion restriction. (2) Upregulation of EMT-related genes and distant tumor spread at autopsy are observed in a subset of DIPG patients who exhibit poorer radiographic response to irradiation and/or higher likelihood of harboring </span><i>H3F3A</i><span> mutations, suggesting possible benefit of upfront craniospinal irradiation. (3) Additional genetic aberrations were identified, including </span><i>DYNC1LI1</i><span> mutations in a subgroup of patients with PR on post-RT MRI; further investigation into potential roles in DIPG tumorigenesis and/or treatment sensitivity is necessary. (4) Whereas most DIPG tumors have an immunologically “cold” microenvironment, there appears to be a subset which harbor a more inflammatory genomic profile and/or higher mutational burden, with a trend toward improved overall survival and more favorable radiographic response to irradiation, in whom immunotherapy should be considered. This study has begun elucidating relationships between post-RT radiographic response with DIPG molecular profiles, revealing radiogenomically distinct subgroups with unique clinical trajectories and therapeutic targets.</span></p>
<p><a href="https://actaneurocomms.biomedcentral.com/articles/10.1186/s40478-020-01107-0" target="_blank" rel="noopener"><span class="button">Full-Text Study</span></a></p> https://thecurestartsnow.org/news/research-update-a-pilot-radiogenomic-study-of-dipg-reveals-distinct-subgroups-with-unique-clinical-trajectories-and-therapeutic-targets/ Thu, 14 Jan 2021 08:57:18 -0500 https://thecurestartsnow.org/9682 In the Lab with Dr. Carl Koschmann: Therapeutic Reversal of Pre-natal Pontine ID1 Signaling in DIPG <p>Researcher at the University of Michigan Hospitals</p>
<p><em>The Cure Starts Now recently sat down with Dr. Carl Koschmann to discuss his research grant for Therapeutic Reversal of Pre-natal Pontine ID1 Signaling in DIPG.</em></p>
<div class="embed-container"><iframe src="https://www.youtube.com/embed//qPBi9WF4EiU" frameborder="0" allowfullscreen=""></iframe></div>
<h3 class="article-title">What is the purpose of your research?</h3>
<p>“Our aim is to get sequencing from as many spots as we could separate from the pons, where the tumor is located, and, effectively, get as much information as we could about each spot, while trying to figure out how the spots were different and how we might see differences in the DNA that has mutated, as well as genes that were over-expressed or under-expressed. We call that heterogeneity within the tumor. At this time, there are very few DIPGs that have been studied in such detail, but, still, there's not a lot that we know. Additionally, we looked for a gene that was expressed called ID1 because we saw a mutation in the gene ACVR1 and the Hawkins lab (Dr. Cynthia Hawkins, Researcher at Sick Kids Hospital and member of the Medical Advisory Council of The Cure Starts Now) had just published a paper on ACVR1 and its upregulation of this gene ID1.”</p>
<h3 class="article-title">How does ID1 affect DIPG tumors?</h3>
<p>“ID1 has been found in a lot of human tumors, including breast cancer and adult glioblastoma to control invasiveness of the tumor, and DIPG is the most invasive tumor. Both our lab and the Hawkins Lab have concluded that it may be involved in DIPG. Not much information beyond that is known. We know that that ACVR1 upregulates ID1, but we don't know in human tumors is ID1 expressed differently in different spots in the tumor, is it expressed in all DIPGs, and is there a way that it can be targeted? In order to continue our quest for these answers, we've developed mouse models in our lab and our best mouse model shows the brain developing which gives us insight into the ID1 gene, and how proteins might bind that and cause it to be upregulated.”</p>
<h3 class="article-title">Have the mouse models given you any indication as to why DIPGs develop?</h3>
<p>“Our best explanation is that when a child’s brainstem develops, which mostly happens prenatally, those cells use ID1 to form a brainstem. Once the brainstem is formed, that signal pathway is turned off because the brainstem doesn't need to keep growing. It's formed by age four to 10 at the latest. What we think happens in DIPG is through various reasons, and we believe one of those might be ACVR1, which causes the cells to turn it back up and there it's inappropriately turned on. When this happens, it begins dividing and invading in a highly aggressive manner, and it's really a signaling pathway that should have been turned off as soon as the brainstem was developed. Our hope is that this is relevant for the DIPGs even beyond the ACVR1 mutation and that cannabidiol (CBD) or future drugs targeting ID1 can be used to slow that down.”</p>
<h3 class="article-title">What does the support of the DIPG Collaborative mean to you and your team?</h3>
<p>“Receiving support from the DIPG Collaborative means so much to me and my lab. The funding to pursue this project is critical to making progress, and knowing it was crowd-sourced from a collaboration of family foundations affected by this disease is even more amazing for us. We are looking forward to continuing to build connections and fight this disease with the DIPG Collaborative for many years to come.”</p> https://thecurestartsnow.org/news/in-the-lab-with-dr-carl-koschmann-therapeutic-reversal-of-pre-natal-pontine-id1-signaling-in-dipg/ Mon, 04 Jan 2021 10:15:59 -0500 https://thecurestartsnow.org/9674 The Cure Starts Now Teams Up With Over 200 Families for a Give-a-thon to Fight Cancer <h4 class="article-title">“100 Families Strong” Virtual Give-a-Thon on November 20, 2020</h4>
<p><strong>Cincinnati, OH | November 16, 2020 — </strong>The Cure Starts Now announces that its annual “100 Families Strong” Give-a-Thon will take place this year on Giving First Day, November 20, 2020. The 2019 Give-a-Thon raised almost $300,000.</p>
<p>More than 200 families from around the world are joining together for Giving First Day on November 20, 2020, to participate in The Cure Starts Now’s virtual “100 Families Strong” Give-a-Thon to raise money for cancer research. Every year millions of families are affected by pediatric cancer, yet every year billions of dollars are spent on material objects around the holiday season instead of being given to cancer research to help save lives. In an effort to put our children first, before Black Friday and Cyber Monday, The Cure Starts Now founded "Giving First Day" and is asking that people give first on November 20, 2020, to help make a difference in the lives of children battling cancer and their families.</p>
<blockquote>
<p>“This year, with over 200 families, it will be record breaking! ‘100 Families Strong’ is our way of giving families an unparalleled opportunity to share their child’s story while raising money to fight the very disease that has impacted their lives.” – Brooke Desserich, Executive Director of The Cure Starts Now</p>
</blockquote>
<p>The “100 Families Strong” campaign is a three-month-long fundraiser that empowers families to use their grief and pain caused by childhood cancer to enact change while honoring their child’s legacy. It provides an avenue that would otherwise not be available for families to support a vital cause by sharing their child’s story.</p>
<p>The Cure Starts Now’s “100 Families Strong” Give-a-Thon on Giving First Day will begin streaming live on Facebook at 2:00 PM EST. To learn more about the “100 Families Strong” campaign and virtual Give-a-Thon, please visit <a href="https://donate2csn.org/100strong">https://donate2csn.org/100strong</a>.</p>
<p><em><u> </u></em></p>
<p><strong>About The Cure Starts Now</strong><u><br /></u>The Cure Starts Now was started in honor of 6-year-old Elena Desserich, a Cincinnati girl who battled a rare, aggressive form of brain cancer known as DIPG. Today, The Cure Starts Now Foundation has over 40 locations in three countries and is the only cancer foundation dedicated to finding the Homerun Cure™ for cancer by focusing on one of the rarest, most aggressive forms of cancer. Believing in more than just awareness, The Cure Starts Now has funded over $15 million in cancer research, resulting in over 97 cutting edge research grants in 15 countries since 2007. Learn more about The Cure Starts Now and their mission to find the Homerun Cure™ for cancer at <a href="http://www.thecurestartsnow.org">www.thecurestartsnow.org</a>, and follow <a href="http://www.facebook.com/TheCureStartsNow/">www.facebook.com/TheCureStartsNow/</a> for updates.</p> https://thecurestartsnow.org/news/the-cure-starts-now-teams-up-with-over-200-families-for-a-give-a-thon-to-fight-cancer/ Fri, 13 Nov 2020 13:21:15 -0500 https://thecurestartsnow.org/9628 Corporate Giving Reaches New Level <p>COVID-19 has caused so many typical office traditions and practices to be put on hold or even canceled altogether.  With the holidays approaching, companies usually rely on the festive spirit to create comradery and team-building with such holiday favorites as white elephant exchanges, customer gift drop-offs, and company parties.  This year, those practices may not be possible.  But consider starting a new tradition.  Dedicate the amount of money typically spent on parties or customer gifts to a charity.</p>
<p>Companies that incorporate charitable giving into their business plan increase employee satisfaction and improve their sales and branding.  The result of a company giving program, particularly this year, will help cut through the clutter and noise to truly deliver far better returns than any creative ad campaign you might have been considering. </p>
<p>To increase employee engagement, you can also incorporate an optional employee gift-giving, so your employees have the option to be part of the charitable giving.  Employees who see that their company supports charities as much as bottom lines will boost employee loyalty and pride.</p>
<p>The most important factor in a giving program is choosing the right charity.  The Cure Starts Now is focused on finding the Homerun Cure for all cancers starting first with childhood cancers.  The foundation has staff members dedicated to managing company charitable giving programs, along with the expertise to provide needed support and materials for giving campaigns. From custom cards to personalized thank you notes, they will work with your company to find the most important ways to share your generous donation and maximize your brand visibility.</p>
<p>Due to lack of face-to-face contact, employee morale is on a downslide.  But coming together to help those less fortunate will help boost not only your company culture but also elevate your company as a philanthropic leader in your community while helping a charity achieve its mission.</p>
<p>To incorporate company giving into your holiday, please reach out to Sheila Tillman at 513-772-4888 or <a href="mailto:sheila.tillman@thecurestartsnow.org">sheila.tillman@thecurestartsnow.org</a>.</p>
<p><em><u> </u></em></p>
<p><em><u>About The Cure Starts Now</u></em></p>
<p><em>The Cure Starts Now was started in honor of 6-year-old Elena Desserich, a Cincinnati girl who battled a rare, aggressive form of brain cancer known as DIPG. Today, The Cure Starts Now Foundation has over 40 locations in three countries and is the only cancer foundation dedicated to finding the Homerun Cure</em>™<em> for cancer by focusing on one of the rarest, most aggressive forms of cancer. Believing in more than just awareness, The Cure Starts Now has funded over $15 million in cancer research, resulting in over 97 cutting edge research grants in 15 countries since 2007. Learn more about The Cure Starts Now and their mission to find the Homerun Cure</em>™<em> for cancer at </em><a href="http://www.thecurestartsnow.org"><em>www.thecurestartsnow.org</em></a><em>, and follow </em><a href="http://www.facebook.com/TheCureStartsNow/"><em>www.facebook.com/TheCureStartsNow/</em></a><em> for updates.</em></p> https://thecurestartsnow.org/news/corporate-giving-reaches-new-level/ Wed, 11 Nov 2020 11:17:56 -0500 https://thecurestartsnow.org/9625 Re-irradiation Side Effects and Considerations <p><em>This article originally appeared on <a href="https://www.dipg.org/blog/dipg-re-irradiation-side-effects-and-considerations/" title="DIPG Re-irradiation Side Effects and Considerations">DIPG.org</a></em></p>
<hr>
<p><em>The Cure Starts Now sat down with Dr. Luke Pater, Associate Professor of Radiation Oncology at the University of Cincinnati Department of Radiation Oncology and Cincinnati Children’s Hospital, to discuss re-irradiation in terms of DIPG, DMG and medulloblastoma.</em></p>

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<p><strong><br>Recently families facing progression of DIPG, DMG and Medulloblastoma have received recommendations to consider re-irradiation, can you explain what this involves?</strong></p>
<p><em>Re-irradiation for brain tumors is very similar to the initial experience for patients. It involves the same planning process with CT simulation and subsequent daily radiotherapy. The difference lies primarily in the dose considerations given that the brain never fully recovers from the initial treatment. This makes further radiotherapy typically of a higher risk than the first course. </em></p>
<p><strong>Is this something new or is it being recommended because of some evidence of efficacy?</strong></p>
<p><em>Re-irradiation is not new; however, it is currently being applied more often. This is largely due to an increase in experience and data showing safety. Multiple publications have come out related to DIPG, DMG and medulloblastoma tumors as well as other intracranial tumors showing that with appropriate precautions, reirradiation can be safely delivered with acceptable risks. </em></p>
<p><em>The benefits are variable pending multiple clinical factors such as the specific tumor type, time from initial treatment and adjuvant chemotherapy/immunotherapy/target therapy options. </em></p>
<p><strong>What should families and patients know about re-irradiation, including side effects?</strong></p>
<p><em>Re-irradiation poses the same risks as would have been discussed at initial course of treatment. This is due to the fact that the same central nervous system tissues will be exposed to radiation. If there is a change in the intracranial site treated, then the particular risks could change. For example, lesions located near the optic apparatus will have risks of radiation induced vision changes and those near the motor cortex may pose a risk of weakness if the patient develops damaged tissue from the exposure. </em></p>
<p><strong>Is there a particular type of radiation to consider?</strong></p>
<p><em>Similar to the upfront setting, the vast majority of radiotherapy for brain tumors is administered externally, meaning from a machine or material producing radiation which is then directed into the patient. Photon and proton radiotherapy are the two most common forms of radiotherapy delivered in this fashion. Tumor location, patient prognosis, possibility of adjuvant therapies, prior radiation treatment and its dose to critical areas, time frame needed to initiate treatment as well as socioeconomic factors, such as ability to get to a particular center for the duration of treatment, all play a role in selection of the best type of radiotherapy for an individual patient. </em></p>
<p><strong>Do some procedures involve combinational therapies?</strong></p>
<p><em>Many retreatment patients are either continuing on, or initiating a new therapy in addition to radiation. This may also be in the context of a clinical trial. Some agents require a break wither before, during or after radiation due to risks of synergistic mechanisms causing an increase in toxicity. </em></p>
<p><strong>Anything else you can tell us about re-irradiation?</strong></p>
<p><em>Clinicians, like patients and their families, are saddened that they have to consider another course of radiation. It is their hope that all patients are tumor free with their upfront treatment. However, clinicians recognize that some of these malignancies recur. Re-irradiation is not always a safe or appropriate consideration, yet they are pleased to offer it when needed and deemed safe. Clinicians continue to refine the optimal doses and techniques to recommend, for example with an active institutional trial for cases DMG that are currently ongoing.</em></p> https://thecurestartsnow.org/news/re-irradiation-side-effects-and-considerations/ Mon, 02 Nov 2020 13:02:22 -0500 https://thecurestartsnow.org/9614 Translating Clinical Trials <p><em>Keith Desserich, Chairman of the Board at The Cure Starts Now, explains clinical trials – what they mean for cancer patients and how they work.</em></p>

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<p>Clinical trials are set up in phases, all designed to focus on an idea. We call these preclinical, or even translational research trials. They are designed to conduct testing on cancer cells in a test tube or mouse modeling.  Ultimately you are trying to determine whether or not this idea, this concept, is actually going to work on cancer cells.</p>
<p>From there, if you're successful, you might end up moving into Phase 0 drug trials. These are very small groups - small numbers of patients. They're quick trials. Sometimes they may not be a real benefit to the patient, but what they're designed to do is to figure out how the drug works and test the concept of “if it will work in a test tube, will it also work in human type of trial?”</p>
<p>The real conventional phases and the conventional trials start with a Phase I trial. This is what we classically call clinical trials. What this is designed to do is determine whether or not the treatment is safe. It's not focused on whether or not the drug works or the concept works. It's about looking at the maximum tolerated dose, or MTD. Effectively, what they do is progress through each one of the patients with a slightly higher dose until they start to see side effects.</p>
<p>From there, if it continues and there is a safe option for it, they move into Phase II clinical trials. Phase II clinical trials are where we start to evaluate whether or not the treatment works. For those, we're talking about 25-100 different patients, and there may even be different treatment options with different dosages and/or combinations of drugs. This is where we're starting to see some of the results of it and determining whether or not there's a potential that we can possibly use this for future treatments against cancer.</p>
<p>The next phase is a Phase III clinical trial. This phase is about determining whether or not it's better than what we currently have as standard treatments. These are often randomized trials with several hundred participants. It can be spread out over many different centers - even internationally. Even the doctor sometimes doesn't know who has received it. This is what we call a double-blind sampling.</p>
<p>If it succeeds through Phase I, II and III, and we can show the dosage actually works, and that it's better than what's currently on the market, then the hope is that the drug can go ahead and get approval through government organizations like the FDA. If it does, even after that, sometimes we’ll even create a Phase IV trial.  This is where we go back to look at approved drugs, and thousands of different people to discern is if there's something that we didn't know. Maybe there's a side effect. Maybe there's something else that it can possibly be used to treat.</p>
<p>Sometimes patients and families can get frustrated just trying to understand which phase a trial is in and whether it's going to benefit them. But, one of the biggest questions that we get asked is, why has it stopped? You see this ongoing right now as we deal with the current pandemic.  There – just like in cancer research - trials are paused. Often these are paused because either they found that there was a side effect or a problem and they don't want to keep introducing it to new patients. Sometimes they find that it wasn’t related to the trial and then the trial opens back up in a few days or weeks.  Sometimes they just reach the patient number or the threshold that they were looking for in their trial framework. Ultimately, it is about safety, because no one wants to treat hundreds, or even thousands of people, without fully identifying whether the drug or treatment actually works.</p>
<p>Other times the reason why treatments are paused is because they may be moving to the next phase, and that's a good thing. It may take a little bit of time to ramp up or change strategies, or even get some participation, to be able to move on to the next phase.</p>
<p>As you go through this, it is important to know that sometimes even the doctors that are participating in the administration of the trial may not even know the results until the trial ends. They may know from their patient group, and they may have some basic understanding of it, but at the end of the day, whether a phase is open or closed really does relate back to you and helps determine whether it's a trial that you want to participate in.</p>
<p>To make it easier, we created a trial update finder at <a href="https://www.dipg.org/treatment/clinical-trials/active-clinical-trials/" title="Active Clinical Trials">dipg.org</a> and <a href="https://www.medulloblastoma.org/treatment/active-clinical-trials/" title="Active Clinical Trials">medulloblastoma.org</a> geared for those families facing a diagnosis of DIPG, DMG or medulloblastoma brain cancers.  There you can actually log in and pull up any trials that are open and/or closed, and return daily results as they open and close.  And with this system, you aren’t just pulling trial data in the U.S.A. but also European, Canada, Australia and New Zealand trials.  It’s all designed to give the patient and family the power of information and the ability to discuss the latest options with their doctor.</p> https://thecurestartsnow.org/news/translating-clinical-trials/ Fri, 16 Oct 2020 08:51:26 -0500 https://thecurestartsnow.org/9532 Cancer Research Fundraiser Goes Global & Exceeds Expectations by 700% Despite COVID-19 <h4 class="article-title">The Cure Starts Now’s "The Great Relay for Research" Raised Over $175,000 for Homerun Cure™ Cancer Research</h4>
<p><strong>Cincinnati, OH | October 1, 2020 — </strong>The Cure Starts Now’s first annual “The Great Relay for Research” raised $179,105 for Homerun Cure™ cancer research surpassing their original goal by over 700 percent.</p>
<p>With the cancellation of nearly 120 crucial spring and summer fundraising events due to the ongoing COVID-19 pandemic, the cancer research grant funding cycle for The Cure Starts Now is in jeopardy.</p>
<p>The Cure Starts Now adapted by going virtual with an increased social media presence and by hosting online events like “The Great Relay for Research.” During this relay, each of the foundation’s 41 chapters were given the baton to fundraise virtually in their communities for one day before they passed it to the next chapter. Every dollar donated counted as one mile and the goal was to circle the equator, which is approximately 25,000 miles. With the support of The Cure Starts Now’s chapters and their generous communities, the relay circled the globe seven times.</p>
<blockquote>
<p>"We are incredibly proud of our chapters and all the work they put in to make The Great Relay for Research a success. Our chapters are the reason we are able to continue funding innovative Homerun Cure™ cancer research. We couldn’t do this without them." – Brooke Desserich, Executive Director of The Cure Starts Now</p>
</blockquote>
<p>The Cure Starts Now has seen great success with virtual events this year. Most events rely on the community coming out in person to attend an event and the change to a virtual platform brought much uncertainty, but their supporters continue to prove they are just as dedicated to finding the Homerun Cure™ for cancer.</p>
<p>To learn more about The Cure Starts Now and upcoming events, please visit <a href="http://www.thecurestartsnow.org">www.thecurestartsnow.org</a>.</p>
<p><em><u> </u></em></p>
<p><em><u>About The Cure Starts Now</u></em></p>
<p><em>The Cure Starts Now was started in honor of 6-year-old Elena Desserich, a Cincinnati girl who battled a rare, aggressive form of brain cancer known as DIPG. Today, The Cure Starts Now Foundation has over 40 locations in three countries and is the only cancer foundation dedicated to finding the Homerun Cure</em>™<em> for cancer by focusing on one of the rarest, most aggressive forms of cancer. Believing in more than just awareness, The Cure Starts Now has funded over $15 million in cancer research, resulting in over 97 cutting edge research grants in 15 countries since 2007. Learn more about The Cure Starts Now and their mission to find the Homerun Cure</em>™<em> for cancer at </em><a href="http://www.thecurestartsnow.org"><em>www.thecurestartsnow.org</em></a><em>, and follow </em><a href="http://www.facebook.com/TheCureStartsNow/"><em>www.facebook.com/TheCureStartsNow/</em></a><em> for updates.</em></p> https://thecurestartsnow.org/news/cancer-research-fundraiser-goes-global-exceeds-expectations-by-700-despite-covid-19/ Thu, 01 Oct 2020 09:46:49 -0500 https://thecurestartsnow.org/9498 Cincinnati Children's Announces Naming of Brain Tumor Center <p><em>The following article first appeared on <a href="https://www.cincinnatichildrens.org/news/release/2020/cure-starts-now" target="_blank" rel="noopener">cincinnatichildrens.org</a>:</em></p>
<h4 class="article-title">Brain Tumor Center to be named after foundation that helps fight pediatric brain cancers</h4>

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<p>Cincinnati Children’s Hospital Medical Center and The Cure Starts Now Foundation have been working together for more than 12 years to find ways to cure pediatric cancers. To recognize the collaboration, Cincinnati Children’s is announcing the naming of<span> </span><a href="https://www.cincinnatichildrens.org/service/b/brain-spinal" title="Learn more about The Cure Starts Now Foundation Brain Tumor Center at Cincinnati Children's.">The Cure Starts Now Foundation Brain Tumor Center</a><span> </span>as part of a multimillion-dollar donation to fund pediatric brain cancer research.</p>
<blockquote>
<p>“This generous gift allows us to move our mission forward, which is to attack these terrible diseases from the bench to the bedside,” said<span> </span><a href="https://www.cincinnatichildrens.org/bio/p/john-perentesis" title="Learn more about John Perentesis, MD.">John Perentesis, MD</a>, director of the Division of Oncology at Cincinnati Children’s. “We are extremely grateful to Brooke and Keith Desserich and everyone at The Cure Starts Now for their tireless support.”</p>
</blockquote>
<p>Brooke and Keith Desserich co-founded<span> </span><a href="/" target="_blank" aria-label="Opens in new window." title="Visit The Cure Starts Now Foundation website to learn more." rel="noopener">The Cure Starts Now Foundation</a><span> </span>in 2007 after the passing of their daughter, Elena, from diffuse intrinsic pontine glioma (<a href="https://www.dipg.org/facts/what-is-dipg/" title="What is DIPG">DIPG</a>).</p>
<p>“Elena’s legacy lives on, and now it’s about helping all children with pediatric cancer,” said Brooke Desserich, Elena’s mom. “It is a promise to support breakthrough strategies that will fundamentally change how we fight all cancers. We call this a ‘homerun cure’ and are proud to help partner with Cincinnati Children’s.”</p>
<p>The Cure Starts Now Foundation has generously funded millions of dollars in brain tumor research at Cincinnati Children’s since 2008. The naming of the center not only recognizes the current partnership but also a collaboration for future innovative research.</p>
<p>“Cincinnati Children’s has been a leader in revolutionary strategies for children fighting cancer from the beginning,” said Desserich.</p>
<p>“This is about creating a new and different way to attack DIPG and other rare, lethal cancers,” Dr. Perentesis said. “By working together, we can move this important work forward and one day lead us toward a cure.”</p>
<div id="contentmaster_1_pagemaincontent_1_columnprimary_0_innersingle_0_panelContact">
<h3>Contact Information</h3>
<p>Shannon Kettler<br><a href="mailto:shannon.kettler@cchmc.org">shannon.kettler@cchmc.org</a></p>
</div> https://thecurestartsnow.org/news/cincinnati-childrens-announces-naming-of-brain-tumor-center/ Wed, 23 Sep 2020 10:52:38 -0500 https://thecurestartsnow.org/9467 Research Update: Integration of Multiple Platforms for the Analysis of Multifluorescent Marking Technology Applied to DIPG <p><em>In 2017 Dr. Mara Vinci of the <span>Bambino Gesù Children’s Hospital</span> proposed an innovative study into investigating the role of DIPG-derived exosomes in tumor growth and invasion. <a href="/research/research-and-grants/ospedale-pediatrico-bambino-gesu-2017-10-01/" title="Ospedale Pediatrico Bambino Gesu: 2017-10-01">This project was approved for funding</a> by the DIPG/DMG Collaborative and The Cure Starts Now and here are his results:</em></p>
<h3 class="article-title">Integration of Multiple Platforms for the Analysis of Multifluorescent Marking Technology Applied to Pediatric GBM and DIPG</h3>
<h4 class="article-title"><br>Abstract</h4>
<p><span>The intratumor heterogeneity represents one of the most difficult challenges for the development of effective therapies to treat pediatric glioblastoma (pGBM) and diffuse intrinsic pontine glioma (DIPG). These brain tumors are composed of heterogeneous cell subpopulations that coexist and cooperate to build a functional network responsible for their aggressive phenotype. Understanding the cellular and molecular mechanisms sustaining such network will be crucial for the identification of new therapeutic strategies. To study more in-depth these mechanisms, we sought to apply the Multifluorescent Marking Technology. We generated multifluorescent pGBM and DIPG bulk cell lines randomly expressing six different fluorescent proteins and from which we derived stable optical barcoded single cell-derived clones. In this study, we focused on the application of the Multifluorescent Marking Technology in 2D and 3D in vitro/ex vivo culture systems. We discuss how we integrated different multimodal fluorescence analysis platforms, identifying their strengths and limitations, to establish the tools that will enable further studies on the intratumor heterogeneity and interclonal interactions in pGBM and DIPG.</span></p>
<p><a href="https://www.mdpi.com/1422-0067/21/18/6763/htm" target="_blank" rel="noopener"><span class="button">Full-Text Study</span></a></p> https://thecurestartsnow.org/news/research-update-integration-of-multiple-platforms-for-the-analysis-of-multifluorescent-marking-technology-applied-to-dipg/ Wed, 23 Sep 2020 09:22:30 -0500 https://thecurestartsnow.org/9466 Graeter's Annual Cones for the Cure Campaign Raises Over $1 Million <h4 class="article-title">Cones For The Cure Fundraising Campaign Has Raised Over $1 Million For Homerun Cure™ Cancer Research Since It Began In 2009</h4>

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<p><strong>Cincinnati, OH | September 11, 2020 — </strong>The Cure Starts Now, in partnership with Graeter’s, today announced that the Cones for the Cure campaign has raised over $1 million in funds for Homerun Cure™ cancer research since its inception in 2009.</p>
<p>The Cure Starts Now and Graeter’s have teamed up for the past 11 years to raise funds for crucial cancer research through the Cones for the Cure campaign. The annual event is accompanied by the limited-return of the beloved ice cream flavor, Elena’s Blueberry Pie, named after 6-year-old Elena Desserich, who lost her battle with an aggressive form of brain cancer known as DIPG. During the Cones for the Cure campaign, Graeter’s donates a portion of proceeds from ice cream sales of Elena’s Blueberry Pie to The Cure Starts Now – the international charity originally founded in Elena’s honor – in support of innovative cancer research.</p>
<blockquote>
<p>“We are beyond thrilled that Cones for the Cure has raised over $1 million,” said Brooke Desserich, Executive Director of The Cure Starts Now. “This extraordinary partnership has helped us reach thousands of people, while also funding ground-breaking Homerun Cure™ research. We are so grateful for all the folks at Graeter’s and for their dedication, enthusiastic support and friendship.”</p>
</blockquote>
<p><em>“Every year we help raise money for The Cure Starts Now with our signature ice cream flavor,” said Chip Graeter, 4<sup>th</sup> generation co-owner of Graeter’s. “It’s so easy to say ‘not this year’, but there still isn’t a cure for pediatric cancer, so we still have work to do. We created this special ice cream flavor more than a decade ago and have been committed to this cause ever since. We’re not stopping now.” </em></p>
<p>The Cones for the Cure campaign started in 2009, when Graeter’s, inspired by the story of Elena, partnered with The Cure Starts Now to help raise awareness and critical funding for pediatric cancer research. The campaign has been successful every year and has now raised over $1 million. During this year’s annual Cones for the Cure, from Sept. 10 through Sept. 20, Graeter’s is offering customers a free scoop of Elena’s Blueberry Pie ice cream in a sugar cone through its online app or a coupon found on www.conesforthe cure.org, no purchase necessary but donations are encouraged.</p>
<p>To learn more about Cones for the Cure or to make a donation, please visit <a href="http://www.conesforthecure.org">conesforthecure.org.</a></p>
<p><strong>About Graeter’s<br></strong><em>Graeter’s Ice Cream, celebrating its 150<sup>th</sup> anniversary in 2020, produces craft ice cream using French Pots®, a small batch, artisanal method of production dating back over a century. Graeter’s has won the hearts of ice cream enthusiasts across the country as well as the respect of the nation’s most influential foodies. Tasted among 13 national brands, Graeter’s was voted the #1 Vanilla Ice Cream by MyRecipes.com in 2019. Famous for their signature chocolate chips, the Cincinnati-based company remains family owned and operated and continues to handcraft ice cream 2½ gallons at a time. Today, Graeter’s currently has 55 retail stores and ships over 300,000 pints annually for online mail order sales. Graeter’s can also be found in more than 6,000 grocery stores in 46 states. Visit </em><a href="http://www.graeters.com"><em>www.graeters.com</em></a><em> for more information.</em></p>
<p><a href="https://www.facebook.com/Graeters"><em>https://www.facebook.com/Graeters</em></a><br><a href="https://twitter.com/Graeters"><em>https://twitter.com/Graeters</em></a><br><a href="https://instagram.com/graeters/"><em>https://instagram.com/Graeters</em></a><br><a href="https://www.pinterest.com/Graeters/"><em>https://www.pinterest.com/Graeters</em></a></p>
<p><strong><em>About The Cure Starts Now<br></em></strong><em>The Cure Starts Now was started in honor of 6-year-old Elena Desserich, a Cincinnati girl who battled a rare, aggressive form of brain cancer known as DIPG. Today, The Cure Starts Now Foundation has over 40 locations in three countries and is the only cancer foundation dedicated to finding the Homerun Cure for cancer by focusing on one of the rarest, most aggressive forms of cancer. Believing in more than just awareness, The Cure Starts Now has funded over $14 million in cancer research, resulting in over 97 cutting edge research grants in 15 countries since 2007. Learn more about The Cure Starts Now and their mission to find the Homerun Cure for cancer at </em><a href="http://www.thecurestartsnow.org"><em>www.thecurestartsnow.org</em></a><em>, and follow </em><a href="http://www.facebook.com/TheCureStartsNow/"><em>www.facebook.com/TheCureStartsNow/</em></a><em> for updates.</em></p> https://thecurestartsnow.org/news/graeters-annual-cones-for-the-cure-campaign-raises-over-1-million/ Mon, 14 Sep 2020 10:28:59 -0500 https://thecurestartsnow.org/9445 Dr. Han Shen Discusses Overall Progress on his DIPG Research for The Cure Starts Now and the DIPG Collaborative 
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<p>
<p>Dr. Han Shen, Westmead Institute for Medical Research, Australia<br>Funded Project: <a href="/research/research-and-grants/university-of-sydney-2019-11-18/" title="University of Sydney: 2019-11-18">Targeting hypoxia and mitochondrial metabolism with repurposing drugs as an approach of radiosensitization for diffuse intrinsic pontine gliomas</a><br>Funded Amount: $100,000</p>
<p><em>Dr. Shen provides an update on his recent project with the DIPG Collaborative and The Cure Starts Now and explains how it is providing clues to new treatment options for diffuse instrinsic pontine glioma.</em></p>
<hr>
<p>"<a href="https://www.dipg.org/facts/what-is-dipg/" title="What is DIPG">DIPG</a> is the most malignant childhood primary brain tumor arising from the brain stem. <a href="https://www.dipg.org/treatment/radiation-therapy/" title="Radiation Therapy">Radiotherapy</a> is the only standard treatment, but almost all the DIPG comes back with radial resistance, which means radiotherapy will no longer be able to kill this tumor's cells. To tackle this urgent clinical problem, we're trying to overcome radio resistance of the DIPG tumors, such that radiotherapy can eliminate as many tumor cells as possible. Radiation needs oxygen to kill tumor cells more effectively. And the DIPG tumors are recently reported to be hypoxic, a condition with reduced oxygen level. This biological feature may significantly contribute to radio resistance of DIPG cells.</p>
<p>We, therefore, repurposed antidiabetic drugs to reduce the oxygen consumption rate of the tumor cells so that the hypoxic condition can be improved by sparing more oxygen. The antidiabetic drugs are well tolerated in children, and have long been used in clinic without significant side effects. We have seen very promising effects from this class of drug when they are combined with radiotherapy to kill DIPG tumors.</p>
<p>In the next step, we will be evaluating this combination therapy in our animal model. We're also working on some predictive biomarkers to identify patients who will most likely benefit from this combination treatment. And this way, we will only give the right treatment to the right patient, so patients don't end up receiving treatments with no therapeutic benefit."</p>
<p><span class="button"><a href="https://jeccr.biomedcentral.com/articles/10.1186/s13046-020-01639-2" target="_blank" rel="noopener">Read the Study</a></span></p> https://thecurestartsnow.org/news/dr-han-shen-discusses-overall-progress-on-his-dipg-research-for-the-cure-starts-now-and-the-dipg-collaborative/ Wed, 22 Jul 2020 08:53:11 -0500 https://thecurestartsnow.org/9220 Research Update: New Links to Overcome Radiation Resistance in High-Grade Gliomas <p><em>In 2019 Dr. Han Shen of the University of Sydney  proposed an innovative study into the impact of glycolysis, hypoxia, and circadian rhythm on radiotherapy treatment to high grade gliomas. Its impact would be to possibly refine how we administer radiation to patients in the hopes of improving one of the oldest and most effective treatments to brain cancers. <a href="/research/research-and-grants/university-of-sydney-2019-11-18/" title="University of Sydney: 2019-11-18">This project was approved for funding</a> by the DIPG/DMG Collaborative and The Cure Starts Now and here are his results:</em></p>
<h3 class="article-title">Hypoxia, metabolism, and the circadian clock: new links to overcome radiation resistance in high-grade gliomas</h3>
<h4 class="article-title"><br>Abstract</h4>
<p><span>Radiotherapy is the cornerstone of treatment of high-grade gliomas (HGGs). It eradicates tumor cells by inducing oxidative stress and subsequent DNA damage. Unfortunately, almost all HGGs recur locally within several months secondary to radioresistance with intricate molecular mechanisms. Therefore, unravelling specific underlying mechanisms of radioresistance is critical to elucidating novel strategies to improve the radiosensitivity of tumor cells, and enhance the efficacy of radiotherapy. This review addresses our current understanding of how hypoxia and the hypoxia-inducible factor 1 (HIF-1) signaling pathway have a profound impact on the response of HGGs to radiotherapy. In addition, intriguing links between hypoxic signaling, circadian rhythms and cell metabolism have been recently discovered, which may provide insights into our fundamental understanding of radioresistance. Cellular pathways involved in the hypoxic response, DNA repair and metabolism can fluctuate over 24-h periods due to circadian regulation. These oscillatory patterns may have consequences for tumor radioresistance. Timing radiotherapy for specific times of the day (chronoradiotherapy) could be beneficial in patients with HGGs and will be discussed.</span></p>
<h4 class="article-title">Conclusions</h4>
<p><span>HGGs are fast-growing, aggressive tumors with few treatment options. Radiotherapy is a first-line treatment option, though radioresistance commonly develops in HGGs and this is at least partially due to hypoxia and activation of the HIF pathway. HIF is also known to regulate the expression of genes involved in glycolysis and maintaining stemness of HGGs. Recent work has uncovered links between the circadian clock and HIF pathway while the circadian pathway has been found to drive proliferation, survival and stemness in GSCs. Although there are a large number of studies focusing on all these abovementioned aspects, little is known about how HIF and circadian rhythms may interact on a mechanistic level, and how this interaction further modulates tumor metabolism and contributes to radioresistance in HGGs. The relationship between tumor metabolism, circadian rhythms and HIF is complex and future studies should focus on how these key pathways interact to affect the radiosensitivity of HGGs so that clinical outcomes can be further improved.</span></p>
<p><a href="https://jeccr.biomedcentral.com/articles/10.1186/s13046-020-01639-2" target="_blank" rel="noopener"><span class="button">Full-Text Study</span></a></p> https://thecurestartsnow.org/news/research-update-new-links-to-overcome-radiation-resistance-in-high-grade-gliomas/ Tue, 14 Jul 2020 08:47:37 -0500 https://thecurestartsnow.org/9209 Chris Jones: Beyond the Lab <h6>Team Leader at The Institute of Cancer Research</h6>
<p></p>
<p><em>The Cure Starts Now recently sat down and had a conversation with leading DIPG researcher, Dr. Chris Jones:</em></p>
<p><strong>Why did you decide to focus your research on DIPG/DMG?<br></strong>"When I started my lab, the remit was to develop a research program in an area of unmet need in childhood cancer – nothing exemplifies this better than DIPG/DMG."</p>
<p><strong>What are some of the greatest advancements you have seen with DIPG/DMG research?<br></strong>"What is most remarkable is the way the international research community has worked together to tackle this disease – from pooling impressively large numbers of rare samples for molecular characterization, leading to the discovery of the genes responsible for driving DIPG/DMG, to developing and sharing precious model systems to be able to test new drug treatments in the lab."</p>
<p><strong>What have been the biggest hurdles for you with your research?<br></strong>"When we started there were very few samples available, no models, and little interest from funding bodies to support research into DIPG/DMG.  Simply convincing my own institution that working in this area was a good idea took a major effort as a young faculty member!"</p>
<p><strong>What have been your biggest accomplishments with your work?<br></strong>"The coordinated publication from multiple groups of the first DIPG whole genomes in 2014 was terrifically exciting to be a part of, and opened up numerous avenues for further research."</p>
<p><strong>How has The Cure Starts Now and the <a href="/who-we-are/mission/" title="Mission">Homerun Cure</a> strategy helped you achieve larger cure objective?<br></strong>"Our lab is privileged enough to have consistently received invaluable funding from the Cure Starts Now for many years across a number of different projects. More than that, attending the conferences from the very earliest days has built lasting connections and collaborations that are driving progress in this disease."</p>
<p><strong>Tell us something interesting about yourself that others might not know (ie. Do you play an instrument, have a hidden talent or just an interesting fact about you)<br></strong>"私は日本語を勉強しています。" - <span>I'm studying Japanese.</span></p>
<hr>
<p><em>Learn more about Dr. Jones's research funded by The Cure Starts Now:</em></p>
<ul>
<li><a href="/research/research-and-grants/institute-of-cancer-research-2017-10-01/" title="Institute of Cancer Research: 2017-10-01"><span>Combinational strategies alongside ACVR1 inhibition in DIPG</span></a></li>
<li><a href="/research/research-and-grants/institute-of-cancer-research-2014-09-03/" title="Institute of Cancer Research: 2014-09-03"><span>The evolutionary dynamics of DIPG</span></a></li>
<li><a href="/research/research-and-grants/institute-of-cancer-research-2015-09-02/" title="Institute of Cancer Research: 2015-09-02"><span>The Evolutionary Dynamics of Diffuse Intrinsic Pontine Glioma</span></a></li>
<li><a href="/research/research-and-grants/institute-of-cancer-research-2019-11-05/" title="Institute of Cancer Research: 2019-11-05"><span>Targeting Top3A-Amplified DIPG cells by Sirtuin inhibition</span></a></li>
</ul> https://thecurestartsnow.org/news/chris-jones-beyond-the-lab/ Mon, 13 Jul 2020 12:22:55 -0500 https://thecurestartsnow.org/9154 Getting Involved in the Fight Against DIPG and DMG 
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<p>Want to talk today a little bit about getting involved. Not a day goes by that we don't get an email from a parent or a patient, and they want to know what they can do to help out with DIPG and DMG causes. There’re many ways that people can get involved, but I wanted to talk about a few of them here today. So that in the hopes that more people can get involved in this fight, more people can help us win this fight and more people can join us in this collaborative effort. Because it's really going to take all of us to try to make a difference within DIPG and DMG.</p>
<h3 class="article-title">Step 1: Become an Advocate</h3>
<p>The first thing that you could do, is you can become an advocate. But let's be honest, a lot of the knowledge about DIPG and DMG is already out there. Obviously, there's been children from my daughter, Elena Desserich, to Lauren Hill, to Gabriella Miller, to Chad Carr. Each one of these children have been prominent, they've touched millions of folks in many different countries and their stories have gone all over the place. And that's helpful because people have some knowledge of it, but just like with any other type of cancer, breast cancer, lung cancer, etc. We're pretty much aware of it. So what we have to do is we have to emphasize why it matters. That's really what an advocate's role needs to be as we move into the next 10 year period of time.</p>
<p>When we talk about being an advocate, we need to talk about things such as the homerun potential. We do believe that within DIPG, it's going to teach us, and DMG. It's going to teach us new ways to focus on other types of cancers. And so with that, we believe that we're going to possibly find ways to be able to cure all forms of cancer through the techniques that we learn from. This is called the homerun strategy. It's something that actually was with The Cure Starts Now from the very beginning. That's actually, the reason why we're named The Cure Starts Now, because we proposed this homerun idea in our book, <em>Notes Left Behind</em>. And the last line of it, it said, "The cure starts now." So, the more that we can get that out, I think that'll help. What that's going to do, is tell people why DIPG and DMG matter to them. Even if their own child, or even if they are not personally affected by it.</p>
<h3 class="article-title">Step 2: Talk About Resources</h3>
<p>The second thing an advocate can do is can talk about resources. There are plenty of resources out there. And one of them is informational resources. There's websites, such as <a href="https://www.dipg.org/" title="DIPG.org">DIPG.org</a>, which is the biggest website you're going to find out there for DIPG informationals. To get that information into the hands of parents that are in the fight today, I think is a really, really good idea. Because, as you guys know, on Facebook and through all the various other groups, a lot of misinformation can happen. So we want to make sure that they have the most up to date information possible.</p>
<p>The other way an advocate can get involved with helping to put out resources, is to talk about tools such as the <a href="https://dipgregistry.org" target="_blank" rel="noopener">DIPG Registry</a>. Which allows parents a free second opinion and allows a central review of their MRIs. And best of all, it's not just a database of brain cancers or frankly, just any cancers. It is a registry about DIPG and DMGs. It's specific to what we're looking at so that we can detect patterns of both of these to try to derive the focus on research further.</p>
<h3 class="article-title">Step 3: Raise Money for Research</h3>
<p>Beyond advocacy though, there's lots of other ways. Because at the very end of this and with all the work that we're doing with it, this is not just about advocacy. It is also about raising money. And we do have to raise money to be able to fund research. Perfect example is what we're going through right now, where we just don't have enough money to be able to fund the trials. And so you see a lot of foundations that are closing down their grant cycles are not funding anything at all. Well, the reality is, is the cancer doesn't stop and neither should we. So it does come down to raising money in addition to just talking about it. That's really what The Cure Starts Now, what our DIPG collaborative partners have focused on, is the idea of really trying to raise money so that we can give the tools to the researchers so that they can help us cure it.</p>
<p><a href="/how-to-help/fundraise/" title="Fundraisers"><span class="button">Start a Fundraiser</span></a></p>
<p>There's a couple of ways that people can get involved in this. One of those is they can go ahead and they can start an event. This is kind of a simplified version of it. These are for people who want to be able to help out with one specific thing in a year. They may not want to do this on a weekly basis. They may just want to go ahead and do a fun run, or they may want to go ahead and have a gala. It may be even named after their own child. What that does, is that helps to provide a little bit of a tribute to the inspiration that they left behind, but it also gets people something that they can do to try to help out. Because communities love to help out people that are in the fight, parents in the fight, children in the fight. So, this is an outlet that allows everybody to really get involved. It's simple. It's just a matter of come up with what you enjoy, what maybe some of your friends enjoy and then put on an event. And then donate the proceeds of that to a good charity that's going to invest in DIPG or DMG research.</p>
<p>The second thing that a person can get involved with is they can go out and they can start a foundation. This isn't for everyone. Starting a foundation requires some very strong expertise in legal matters, in accounting. Also just frankly, a little bit of an entrepreneurial spirit. Folks that want us to go out and start a foundation should have very strong contacts with attorneys, very strong contacts with accountants. And should be prepared to really invest about 20 hours a week in the creation of it. In addition, when you go out and you start a foundation, there's some things that you got to invest in. There's really nobody that's going to give you that money, short of yourselves. So starting a foundation, you really got to look at it and say, are you willing yourself to go ahead and invest at least $10,000 into that? The reality is a lot of parents coming out of this fight, typically don't have those types of resources. It makes it tough, both from a time and also in expertise. And frankly, also a money perspective to start a foundation.</p>
<p>Regardless of that, if you have all those skills and that's something that you want to do, I would suggest looking around. I know that when we got into this, we looked around to try to find another foundation that was doing something along the lines of the homerun strategy, was focusing on research and was kind of doing it in the name of all children. Why? Because we know this. My wife and I, Brooke, actually are business owners.</p>
<blockquote>
<p>We're entrepreneurs by trade. And so we, frankly, didn't want to start something new. We knew the challenges that came into that. But, unfortunately, we couldn't find that. So that's why we said, "All right, I guess we've got to do this."</p>
</blockquote>
<p>If you find a foundation that you already know of, that you're already aligned with, that you already share goals with, I would suggest partnering with them. It makes it a lot easier on everybody. And frankly, you may even find out that that foundation is very happy to have your help in the process as well.</p>
<h3 class="article-title">Step 4: Become Part of a Foundation</h3>
<p>The next thing that you can do is you can be part of another foundation. That's kind of what I alluded to in the last one, but this is going to get a little bit more in depth. Within The Cure Starts Now, we have chapters. We have 40 plus <a href="/get-involved/chapters/" title="Chapters">chapters</a>, and they're all over the entire world. We have one in Canada and Australia, and then the great majority of them here in the United States.</p>
<blockquote>
<p>These are families that looked at it and said, "You know what? I don't really have enough time, enough investment that I want to make into creating my own foundation.</p>
</blockquote>
<p>That's a little bit much for me. I align with the interest and the need to fund homerun research, and have a kind of a long-term strategy. With what The Cure Starts Now is doing. I'm going to do something a little bit more than just one event per year." What they did is they went ahead and started a chapter. And that's a little easier.</p>
<p>Certainly, you have a little bit of work to do in your area. We do ask that some of our chapters come up with maybe two events per year. It could be a eating out thing at a local restaurant, all the way to a giant gala. Or it could be just a fun run. Either way, it gives them an opportunity to honor their child to go ahead and talk a little bit about their child in the local community. Give people an outlet to be able to get involved with it. But it takes out a lot of the accounting. It takes out a lot of the legal struggles that come along with it. And, it also gives them a voice to be able to participate in a larger research project.</p>
<p>When you're starting an individual foundation or you're donating locally to your individual hospital, you really don't get a decision sometimes on how those funds are used. Both because you may not be investing millions of dollars at a time and because if you're investing it just locally, there may not be any trials that may be focusing on DIPG in your area. By being in a chapter, they get all of that. They're able to see some very large results, very large institutions in terms of the registry and connect consortium and everything being built. They actually get a voice in how those are being created. We need their help as much as they need ours. We're trying to give them some of the systems from it. But to be honest from our chapters, we get a lot of great ideas because this is a partnership, as it should be.</p>
<p>I hope this helps to kind of walk through some of the ways that you can get involved as a parent or even a patient that's in the fight for DIPG, DMG. I would offer one final note and that is, don't do it now. If you're in the fight and you're going day to day to hospitals and such like that. Focus on yourself, or focus on your child. That should really be the most important thing right now. There's plenty of time. And we, as parents that are on the other side of this, are here for you to try to help move it along while you can't. We still need your help, but there'll be time for that.</p>
<p>Need help with getting involved? <a href="/who-we-are/contact-us/" title="Contact Us">Shoot us a message</a>!</p> https://thecurestartsnow.org/news/getting-involved-in-the-fight-against-dipg-and-dmg/ Fri, 03 Jul 2020 09:10:29 -0500 https://thecurestartsnow.org/9124 The Value of Data and the International DIPG/DMG Registry <p><em>The following article originally appeared on <a href="https://www.dipg.org/blog/dipg-patient-database-with-the-international-dipgdmg-registry/" title="DIPG Patient Database with the International DIPG/DMG Registry">DIPG.org</a></em></p>
<hr>
<p>Data by itself offers us no clues to beating cancer. Even as a result of diligent collection from a research trial it offers little more than a confirmation of hypothesis. But what happens when data gets together? What happens when you collect data organically, across platforms and at the source? There you can detect patterns, form new theories and even cure cancer.</p>
<p>It’s not a novel idea to collect data. For hundreds of years researchers fighting every known disease have assembled facts collected from their observations, hoping to prove or disprove their hypotheses. And while well intended, their efforts were frequently hampered by restrictions of both financial and time. They may collect data about the specific diagnosis, the age of the subject or even the gender or geographic origin, but ultimately it was in pursuit of an answer rather than a question.</p>
<p>In 2011 the fight against <a href="https://www.dipg.org/facts/what-is-dipg/" title="What is DIPG">diffuse intrinsic pontine glioma (DIPG)</a> was no different. Dozens of hospitals each had their own limited databases containing an assortment of information for about 10-20 patients for this rare and elusive form of brain cancer. But what was frequently seen as challenge to DIPG in that it only affected between <a href="https://www.dipg.org/statistics/" title="DIPG Stats">150-300 patients per year</a>, suddenly became a strength. You see with DIPG, no one could collect enough data to make any conclusion, let alone develop a treatment protocol for children desperately in need. Whereas with any other form of cancer one singular hospital could collect enough data on 50-100 patients to establish one pattern, with DIPG no hospital could work alone.</p>
<p>This difficulty became the subject of the International DIPG Symposium, first sponsored by <a href="/" title="thecurestartsnow.org">The Cure Starts Now</a> and held in Cincinnati, Ohio in 2011. There we realized that if we were to advance the fight against DIPG we had to first understand the tumor better – and no one hospital or researcher could do it alone. From this convention the <a href="https://dipgregistry.org/" target="_blank" rel="noopener">International DIPG/DMG Registry</a> was born – one of the first of its kind. Unlike other registries, this program was led by both patients and researchers.</p>
<blockquote>
<p>Together over 110 hospitals, countless researchers in over 14 countries and over 70 foundations and chapters came together to form a registry that today defines how many other cancers now collect data.</p>
</blockquote>
<p>Today, support for the Registry is shared through the efforts of the 25+ foundation members of the <a href="https://dipgcollaborative.org/" target="_blank" rel="noopener">DIPG Collaborative</a>. Here the Registry isn’t a factor of what we <em>can</em> collect, or even what we <em>want</em> to prove – instead it is a registry asking everything we can possibly ever want to know. This means we don’t <em>predict</em> patterns, we let the data lead us to the answers. This is what makes a “linked” database different than a random collection of various data inferred from multiple trials. Here patterns are organic, proven both by reliance of a larger sample group and not subject to the prejudice of individual collection procedures that can come with multiple datasets collected from different sample groups that may not match up when compared.</p>
<h3 class="article-title">What has the Registry achieved?</h3>
<p>Already it has advanced not only our understanding of these brain tumors, but it has also fundamentally contributed to how we fight many other cancers. It has helped identify new mutations, offered unimagined drug combinations and demonstrated the true “<a href="/who-we-are/mission/" title="Mission">homerun</a>” potential of this previously unknown cancer called DIPG.</p>
<h3 class="article-title">How does it work?</h3>
<p>Ultimately the International DIPG/DMG Registry is a product of its contributors. Those that offer data to the Registry get access to parts of the data, much in the same way that the Human Genome Project was founded. For those researchers with little to no data to contribute, they can apply to the Registry with a stated goal and be granted access to the data to develop new treatment strategies. Over 50+ clinical trials have been initiated because of this work, with some invented purely as a result of analysis of data trends previously unknown.</p>
<p>Still, data collection is only as good as the integrity of the submission process. Unlike other registries that may have a decentralized data entry process, the International DIPG/DMG Registry utilizes a core staff that travels to the hospitals to uniformly enter data while normalizing certain fields to conform to the current framework. There they can also train local staff as well as establish periodic update timelines.</p>
<p>Best of all, it is for the benefit of the patient. As part of this unparalleled effort, the International DIPG/DMG Registry also provides a vital resource to patients and parents in the fight, offering resources to help provide second opinions, central review of <a href="https://www.dipg.org/facts/diagnosis-and-imaging-of-dipg/" title="Diagnosis and Imaging of DIPG">MRIs</a> (to help minimize misdiagnoses) and key treatment data at their fingertips. Even the data collection is patient-focused, with a committee specifically designed to offer feedback on field management so that it can be responsive to new trends and additional data submissions.</p>
<h3 class="article-title">What information does the Registry collect?</h3>
<p>All in all, each patient entry is subject to genomic and tissue analysis, and over 400 clinical questions. Overall this leads to thousands of data set collection measures on over 1100 patients worldwide. One of the most extensive patient registries in the world, this delivers hundreds of new treatment paths, some of which are still unknown, and a foundation of data that is sure to revolutionize not only DIPG research but all of cancer research.</p>
<h3 class="article-title">Interested in joining the Registry?</h3>
<p>All you need to do is visit <a href="http://www.dipgregistry.org">www.dipgregistry.org</a>. There you can sign up (even if your hospital didn’t present the option at diagnosis) and the Registry team will reach out on your behalf to start the process. Already enrolled? You can confirm that you or your child is in the registry simply by calling the phone number on the website or sending a message – it’s that simple. Want to learn more? At <a href="http://www.dipgregistry.org">dipgregistry.org</a> you’ll find a wealth of data and information about the diagnosis and resources at your fingertips.</p> https://thecurestartsnow.org/news/the-value-of-data-and-the-international-dipgdmg-registry/ Wed, 24 Jun 2020 13:14:28 -0500 https://thecurestartsnow.org/9112 What is the Difference Between DIPG and DMG and what is the H3K27M Histone Mutation? <p><em>The following article originally appeared on <a href="https://www.dipg.org/blog/what-is-the-difference-between-dipg-and-dmg-and-what-is-the-h3k27m-histone-mutation/" title="What is the Difference Between DIPG and DMG and what is the H3K27 Histone Mutation?">DIPG.org</a></em></p>
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<p><a href="https://www.dipg.org/facts/what-is-dipg/" title="What is DIPG">DIPG (Diffuse Intrinsic Pontine Glioma)</a> and <a href="https://www.dipg.org/facts/what-is-dmg/" title="What is DMG">DMG (Diffuse Midline Glioma)</a> are often categorized together but can have different treatments that can lead to slightly different prognosis paths. Still, much of the science, the research, foundational funding and data for both types of brain tumors are grouped under DIPG, mainly because historically much of the work researching DIPG since around 2012 led to the reclassification and current definitions of DMG.</p>
<p><strong>DIPG</strong> is a type of <a href="/brain-tumors/brain-tumor/" title="Brain Tumor">brain tumor</a> found in an area of the brainstem known as the <a href="https://www.dipg.org/facts/what-is-dipg/function-of-the-pons/" title="Pontine Anatomy and Function">pons</a>. The name diffuse intrinsic pontine glioma describes how the tumor grows, where it is found, and what kinds of cells give rise to the tumor. <a href="https://www.dipg.org/facts/diagnosis-and-imaging-of-dipg/" title="Diagnosis and Imaging of DIPG">Diagnoses of DIPG</a> are typically made through an MRI or radiological exam.  Diffuse means that the tumor is not well-contained – it grows out into other tissue so that cancer cells mix with healthy cells. Intrinsic simply means "in", referring to the point or origin. Pontine indicates that the tumor is found in a part of the brainstem called the pons. The pons is responsible for a number of important bodily functions, like breathing, sleeping, bladder control, and balance.  Glioma is a general term for tumors originating from glial cells. Glial cells are found throughout the brain. They make up the white matter of the brain that surrounds and supports the neurons (neurons are cells that carry messages in the brain).  The lowest grade consistent with a DIPG is a grade 2 tumor, but many DIPG tumors will be grade 3 or 4 (the most-aggressive, fastest-growing grades).</p>
<p>Certain factors may lead to improved survival prognosis with those diagnosed with DIPG. They include those patients diagnosed before the age of 3 or after the age of 10, those patients with few symptoms prior to diagnosis and those patients with limited to no growth beyond the pons.</p>
<p>Ultimately some DIPG tumors reviewed by MRI may be termed as “atypical” possibly leading to other diagnosis methodologies such as a biopsy to determine if other treatment options exist.  For this reason it is strongly recommended that patients diagnosed with DIPG seek enrollment in the International DIPG/DMG Registry or the SIOPe DIPG Registry so that the MRI may be centrally reviewed by radiologists with strong experience with these types of tumors.</p>
<p><strong>DMG</strong>, on the other hand, is a clarified diagnosis of a DIPG through a biopsy and more recently through blood biopsy methods.  An astrocytoma located along the midline of the brain, it can also be found in midline structures like the spinal cord or thalamus.  Often these tumors start as “atypical” DIPG and are formally diagnosed as DMG.  Still aggressive, they are often classified as a grade 4 tumor and tend to spread to neighboring tissue. </p>
<p>Starting as early as 2012, due to the surgical advancement of biopsy methods, it was discovered that DMGs also have a specific mutation in the H3F3A gene and are commonly referred to as <strong>H3K27M</strong> (mutant).  As these have received genomic analysis through leading registries such as the <a href="https://dipgregistry.org" target="_blank" rel="noopener">International DIPG/DMG Registry</a> and the SIOPe DIPG Registry, genetic marker identification has led to the discovery of certain drugs and treatments that may be applicable.  This has also led to the findings reported in 2018 in the Journal of Clinical Oncology (<a href="/impact/news/characteristics-of-long-term-survivors-of-dipg/">https://thecurestartsnow.org/impact/news/characteristics-of-long-term-survivors-of-dipg/</a>) detailing a slightly higher chance of improved prognosis with those patients that present the H3K27M mutation.</p>
<p>While a World Health Organization reclassification of these astrocytomas categorizes DIPG as a subgroup of DMG, most researchers and foundations tend to regard DMGs as a parallel group to DIPG in that the diagnosis of a patient starts with DIPG and then is later identified as a DMG after biopsy or blood biopsy methods.</p>
<p><a href="https://www.dipg.org/facts/diagnosis-and-imaging-of-dipg/" title="Diagnosis and Imaging of DIPG">Learn more</a> about the diagnosis and imaging of DIPG</p> https://thecurestartsnow.org/news/what-is-the-difference-between-dipg-and-dmg-and-what-is-the-h3k27m-histone-mutation/ Wed, 17 Jun 2020 12:22:23 -0500 https://thecurestartsnow.org/9104 HeART Auction Raises Over $20,000 to Fund Brain Cancer Research <p>The HeART Auction, organized by a 17-year-old sibling of a DIPG warrior, is truly an example of kids helping kids.  When Grace Desserich was only 4-years-old she watched her sister, Elena, battle a difficult to treat form of pediatric brain cancer known as DIPG. Though she was very young, Grace’s heartbreak was huge. After her sister’s death, their parents started The Cure Starts Now Foundation to fund research so no other family or sibling would have to face this harsh reality of cancer.  Today, The Cure Starts Now Foundation is a leader in not only diffuse intrinsic pontine glioma brain cancer research (DIPG) but also in the funding of “homerun” cure research that applies to many other cancers worldwide.  Since its creation in 2007, it has funded over $14 million in new cancer research in over 114 hospitals in 15 countries nationwide.</p>
<p>The “HeART Auction,” celebrates Elena's love of art while raising money to fund brain cancer research to help kids battling the same type of cancer. Grace has asked DIPG patients from around the country for the last 4 years to donate their HeART artwork for her auction and has raised over $20,000.  Featured each year, this auction offers the special artworks for sale with proceeds benefiting DIPG research.  Each child receives a kit including a canvas taped off in the shape of a heart complete with a small painting kit so that they may be created with ease. </p>
<p>“Grace has taken her love for her sister and is now sharing it with families fighting DIPG,” said Grace’s mother, Brooke Desserich. “Just as Elena was able to share her heart with so many, these children now get to do the same and we couldn’t be prouder.” </p>
<p>Elizabeth Turner is a mom to one of these DIPG warriors.  Diagnosed with DIPG, David Jr. has shared his heart art through this special program.  She writes about her son’s participation in the HeART Auction for the past 2 years, David Jr.’s prognosis and how children with a DIPG diagnosis are outliving the median survival range.</p>
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<p><em>“David Jr. painted two hearts that hang on the walls at The Cure Starts Now headquarters in Cincinnati. You can see them both in their Facebook Live video with Rick Merk. In the video, Rick shares about how when he started at CSN, there weren’t children with multiple hearts on the walls at CSN, because most children with a DIPG diagnosis at that time only lived for a year or less. After the annual HeART Auction every year, CSN has two high quality copies made of each heart, one copy is for their office and the other is sent to the artist’s family. This year, David Jr.’s teachers and staff at his elementary school were the highest bidders for his heart that he designed to look like a shield, because he is stronger than any armor. His heart was the highest purchased this year, putting more money towards finding a cure. </em></p>
<p><em>This past April, we spent a week at the hospital because David Jr.’s tumor had progressed ag<span>ain. He’s gone into “progression” twice. Normally, symptoms increase and cannot be reversed. David Jr. has now completed a second and third course of radiation, successfully shrinking the tumor both times. </span></em></p>
<p><em>When we left the hospital in April, David Jr. couldn’t walk, or talk, and he had difficulty breathing, headaches, and dizziness, along with double and blurred vision. Before being discharged, the doctor shared that going to the ER wouldn’t benefit us if symptoms worsened. He also shared that if the chemo didn’t impact David Jr.’s tumor, we may only have weeks with David Jr. At that point, we weren’t sure if radiation for a third time was still an option. </em></p>
<p><em>Later that night, our radiation doctor called and David Jr. decided he wanted to do it again. Once David Jr. finished radiation, one day some of his symptoms were gone and others improved significantly. One night, he got up and walked around the house at 2:00 AM. That night, we had to lift him into bed and position him, but at 2:00 AM he got out of bed and walked around the house with zero assistance. </em></p>
<p><em>We’ve been living this life for more than two years now (almost 26 months). It is a rollercoaster of highs and lows, today we are on a high. It is unpredictable and exhausting. It is also exciting and our greatest adventure all in one. </em></p>
<p><em>I’m glad David Jr. has two hearts on their wall and ours, now we are ready for a third!” </em></p>
</blockquote>
<p>At The Cure Starts Now, the staff is also ready for a third HeART from David Jr., who since his diagnosis, has been living by the motto, “Make every day the best day ever!”  It is a way of life that has gotten David Jr. and his family through some very tough times and continues to inspire them to live life to the fullest. They have had so many incredible adventures, and their community in Louisville, Ky has fully supported them in helping make everyday the best day for David Jr.  David Jr. has had some amazing experiences, including a parade by Louisville Swat and FBI for his two-year diagnosis anniversary, meeting Kentucky’s Governor Andy Beshear and First Lady, becoming an honorary Taco Bell employee, attending a car show hosted in his honor, a trip to Hawaii and a trip to LEGOLAND in Florida, along with many other adventures.</p>
<p>David Jr. has also been able to find joy and have exciting and amazing days because of small things, such as finding an open Steak n Shake on his current trip to LEGOLAND, watching a movie, getting his cousin a birthday gift, or just eating some ice cream with his family.</p>
<p>The Cure Starts Now continues to empower cancer families to not only tell their child’s story, but also create a legacy that inspires so many across the world. Since the creation of the program, 23 children have participated from as far away as England.  To learn more about the program visit <a href="http://csnevents.org/heart" target="_blank" rel="noopener">csnevents.org/heart</a>.</p> https://thecurestartsnow.org/news/heart-auction-raises-over-20-000-to-fund-brain-cancer-research/ Thu, 11 Jun 2020 08:40:41 -0500 https://thecurestartsnow.org/9098 Maria Tsoli: Beyond the Lab <h6>Senior Research Officer at Children's Cancer Institute, Sydney</h6>
<p></p>
<p><em>The Cure Starts Now recently sat down and had a conversation with leading DIPG researcher, Dr. Maria Tsoli:</em></p>
<p><strong>Why did you decide to focus your research on DIPG/DMG?<br></strong>"<span style="color: #201f1e;">My family has gone through the pain of losing people that were dearly loved from aggressive cancer. Like every other family in the world, we spent many hours researching for local and overseas clinical trials. The feeling of running out of time and the agony of not being able to offer something to help them live longer is something that I will never be able to forget. In 2011 I applied for a job position at the laboratory of A/Prof David Ziegler. When I started, I didn't know much about the biology of DIPG/DMG, but I knew that if I summarized it by keywords, it would be "deadly", “ rapid" "no-options". Being a young mother at that time, I knew that the pain of losing a child would be unbearable. Since then, I have devoted my time in the lab researching in DIPG/DMG in memory of the people I lost and in memory of all the kids that died.</span>"</p>
<p><strong>What are some of the greatest advancements you have seen with DIPG/DMG research?<br></strong>"<span style="color: #201f1e;">I believe that everything that has been achieved for DIPG/DMG is significant from the PDX development to the genomic alterations to the drugs being tested (successful or not successful). Everything is a missing piece in this puzzle, and there are so many amazing studies that have been performed and published. Furthermore, the collaborative nature among the many DIPG/DMG research groups is something that I didn’t experience when I was working with adult cancers and something that I also consider as a fantastic achievement.<o:p></o:p></span>"</p>
<p><strong>What have been the biggest hurdles for you with your research?<br></strong>"Our laboratory focuses on finding therapeutic options that can be rapidly translated. We have tested many drugs that although they worked well in the plastic dish, they didn't offer any benefit in the preclinical models of DIPG/DMG due to minimal penetration through the blood-brain-barrier (BBB). I believe for any researcher working with aggressive brain tumours the BBB is a key challenge. However, I am blessed to be working with a team of enthusiastic young scientists that work very hard and are resilient to any outcome of their experiments. We know that if we fail with any treatment, we want this to happen in the lab and not in the clinic."</p>
<p><strong>What have been your biggest accomplishments with your work?<br></strong>"<span style="color: #201f1e;">I am fortunate to be surrounded by a team of dedicated scientists that work very hard even under the current difficult conditions due to Covid19 pandemic. There isn't anything that has been accomplished that didn't require a team effort. We are grateful for the opportunity we were given to learn from other overseas DIPG/DMG labs and transfer the knowledge to Australia. Our team was the first to handle DIPG/DMG cells and develop PDX models in Australia. This has allowed us to test many drugs with some exhibiting promising outcomes. The most rewarding accomplishment is when our findings from preclinical testing are getting translated to the clinic as Phase I trials.</span>"</p>
<p><strong>How has The Cure Starts Now and the <a href="/who-we-are/mission/" title="Mission">Homerun Cure</a> strategy helped you achieve larger cure objective?<br></strong>"<span style="color: #201f1e;">We are incredibly grateful for all the support we have received over time. This support has allowed us to investigate different therapeutic options that would have been otherwise unable to pursue. In some cases, these initial grants have allowed us to apply for bigger grants in Australia. We know that we will not be able to cure DIPG/DMG with a single agent or a single combination of drugs. Hence, the more options we develop preclinically then, the more we will have to offer to patients in the clinic.<o:p></o:p></span>"</p>
<p><strong>Tell us something interesting about yourself that others might not know (ie. Do you play an instrument, have a hidden talent or just an interesting fact about you)<br></strong>"<span style="color: #201f1e;">My grandfather was an excellent artist. I have witnessed some of his paintings in old Greek movies. I started painting six months ago, and every Saturday afternoon I look forward to my 2 hours of peacefulness. I can’t say that I have his talent, but I hope I will achieve something beautiful one day.</span>"</p>
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<p><em>Learn more about Dr. Tsoli's research funded by The Cure Starts Now:</em></p>
<ul>
<li><a href="/research/research-and-grants/childrens-cancer-institute-2015-11-01/" title="Children's Cancer Institute: 2015-11-01"><span>Fenretinide, a novel agent targeting RTK/PI3K/AKT network for the treatment of Diffuse Intrinsic Pontine Glioma</span></a></li>
<li><a href="/research/research-and-grants/childrens-cancer-institute-2015-02-25/" title="Children's Cancer Institute: 2015-02-25"><span>Facilitates Chromatin Transcription Complex (FACT): A novel therapeutic target against Diffuse Intrinsic Pontine Glioma</span></a></li>
<li><a href="/research/research-and-grants/sydney-children-s-hospital-2018-11-26/" title="Children’s Cancer Institute: 2018-11-26"><span>Polyamine Pathway Metabolism as a Novel Therapeutic Option for Diffuse Intrinsic Pontine Glioma</span></a></li>
<li><a href="/research/research-and-grants/sydney-childrens-hospital-2019-12-20/" title="Sydney Children's Hospital: 2019-12-20"><span>Developing New Epigenetic Combination Treatments Against DIPG</span></a></li>
</ul> https://thecurestartsnow.org/news/maria-tsoli-beyond-the-lab/ Wed, 27 May 2020 11:52:43 -0500 https://thecurestartsnow.org/9060 Oren Becher: Beyond the Lab <h6>Associate Professor of Pediatrics and Biochemistry and Molecular Genetics at Northwestern</h6>
<p></p>
<p><em>The Cure Starts Now recently sat down and had a conversation with leading DIPG researcher, Dr. Oren Becher:</em></p>
<p><strong>Why did you decide to focus your research on DIPG/DMG?<br></strong>"When I was training to become a pediatric oncologist at MSKCC, I cared for a few children with DIPG, and learned very quickly that practically no one was doing research on DIPG/DMG. This was around 2006-2007. This motivated me to choose to focus on DIPG for my research. I felt that research was the only way to one day change the outcome for these unlucky children."</p>
<p><strong>What are some of the greatest advancements you have seen with DIPG/DMG research?<br></strong>"The greatest advancement is likely the discovery of the histone mutations in DIPG. These mutations termed onco-histones are still a subject of intense research and it is still a bit unclear if they are mainly important in tumor initiation or tumor maintenance and whether they can be targeted therapeutically."</p>
<p><strong>What have been the biggest hurdles for you with your research?<br></strong>"The biggest hurdle is the limited number of human DIPG samples for research."</p>
<p><strong>What have been your biggest accomplishments with your work?<br></strong>"Our biggest accomplishments is the development of genetic models for DIPG/DMG. These models are important as they can be generated de novo, in mice with a normal immune system, allowing us to dissect how these tumors arise and evolve over time."</p>
<p><strong>How has The Cure Starts Now and the Homerun Cure strategy helped you achieve larger cure objective?<br></strong>"The Cure Starts Now and <a href="/who-we-are/mission/" title="Mission">Homerun Cure</a> has been a steady source of support for my lab over the years allowing my laboratory to explore various high-risk strategies in order to advance our understanding of DIPG."</p>
<p><strong>Tell us something interesting about yourself that others might not know (ie. Do you play an instrument, have a hidden talent or just an interesting fact about you)<br></strong>"I love to exercise and run about 9 miles each morning (seven days per week on average). I also love to snowboard (I have my own snowboard)."</p>
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<p><em>Learn more about Dr. Becher's research funded by The Cure Starts Now:</em></p>
<ul>
<li><a href="/research/research-and-grants/duke-university-medical-center-2013-11-04/" title="Duke University Medical Center: 2013-11-04"><span>Development of peptide vaccine for diffuse intrinsic pontine glioma</span></a></li>
<li><a href="/research/research-and-grants/duke-university-2011-11-01/" title="Duke University: 2011-11-01"><span>Preclinical Evaluation of Systemic and Direct Delivery of a PDGFR-Alpha Antibody</span></a></li>
<li><a href="/research/research-and-grants/ann-robert-h-lurie-childrens-hospital-2017-10-01/" title="Ann & Robert H. Lurie Children's Hospital: 2017-10-01"><span>Determine the efficacy of BMP and MEK inhibitors with RT to treat ACVR1 mutant DIPG</span></a></li>
<li><a href="/research/research-and-grants/ann-and-robert-h-lurie-childrens-hospital-of-chicago-2018-11-07/" title="Ann and Robert H. Lurie Children's Hospital of Chicago: 2018-11-07"><span>Credentialing an Improved DIPG Mouse Model</span></a></li>
</ul> https://thecurestartsnow.org/news/oren-becher-beyond-the-lab/ Tue, 19 May 2020 13:10:39 -0500 https://thecurestartsnow.org/9050 COVID-19's Impact on Grant Funding <p>The world was forced to grind to a halt because of the COVID-19 pandemic.  The shutdown has caused a domino effect, that is being heavily felt by many, including nonprofits like The Cure Starts Now.  I sat down with Keith Desserich, Co-Founder and Chairman of The Cure Starts Now, to gain insight into how this global pandemic is impacting the crucial research funding we provide to the brain cancer community.</p>
<h3 class="article-title">Research Fundraising</h3>
<p>Due to potential COVID-19 health risks and mandatory stay-at-home orders enacted by federal and local governments, it was necessary for The Cure Starts Now to cancel and/or postpone vital spring fundraising events that are crucial to our cause, such as the annual <a href="/how-to-help/events/once-in-a-lifetime-gala/" title="Once in a Lifetime Gala">Once In A Lifetime Gala</a>, Jade’s Annual Warrior Ball and Team Brock Golf Fore a Cure 2020.  Currently, fundraising dollars are down by approximately 30 percent when compared to this time last year, which will have a significant impact on our ability to fund grants.</p>
<blockquote>
<p>“The good news is, The Cure Starts Now did prepare by focusing on a long-term strategy and on programs such as <a href="http://connectconsortium.org/" target="_blank" rel="noopener">CONNECT</a> that are not as subject to the whims of economic conditions,” said Desserich. “But even with preparation, funds can only last so long.  We estimate that by the time we get to July of this year, the coronavirus pandemic will have a very real impact on the research we are able to fund and the trials we’re hoping to fund in 2021.  If everything turns around, it’ll be good, but if it doesn’t, we will have to make some adjustments to our funding plans.”</p>
</blockquote>
<h3 class="article-title">Research Outlook</h3>
<p>Majority of charities fund grants one of two ways, either ‘Give Locally, Act Locally’ or ‘Best-Of’ funding.  ‘Give Locally, Act Locally’ is exactly what it sounds like, charities solicit donations from local donors, and then turn around and fund local research grants. While ‘Best-Of’ funding is when a charity has a predetermined amount of money to award to a predetermined amount of grant applicants, and then chooses to fund the best submissions that they receive, even if the best isn’t top quality. This is more of a passive competitive way of funding and can also lead to many great quality grants being left unfunded.  It also fails to adopt a long-term strategy, instead forcing researchers to think in limited budgets with limited funds in order to be accepted.</p>
<p>The Cure Starts Now takes a different approach.  Rather than simply funding locally or even purely through a passive competitive process, we fund grants strategically and are frequently developing collaboratives to focus on data trends in a long-term 10-year plan.  This brings together not only the best research, but also ensures that with each grant we move one step closer to the cure in a strategic manner.  This is done in combination with our <a href="/who-we-are/councils/medical-advisory/" title="Medical Advisory">Medical Advisory Council</a> that fosters applicants through multiple Symposiums and formulative discussions.  By doing it this way, The Cure Starts Now is able to fund the proposals with the most potential in discovering the <a href="/who-we-are/mission/" title="Mission">homerun cancer cure</a>.</p>
<p>This past August in Sydney, Australia, The Cure Starts Now hosted one such symposium.  At the International DIPG/DMG Symposium, medical experts from across the globe came together to provide new perspectives on research approaches, and collaborate on out-of-the-box long-term strategies for treatment.  Now researchers who attended the symposium are submitting research grant proposals that could fundamentally change the cancer world.  Unfortunately, these proposals are coming at a time when The Cure Starts Now’s funds are strained due to COVID-19.</p>
<blockquote>
<p>“We’re coming off of this amazing conference with promising protocols and strategies that can fundamentally change the path of cancer research,” said Desserich.  “All at the same time as being faced with a shortage of funds to fund them.  As a charity, when you’ve invested this much into research and strategy, these small challenges have ripple effects that affect hundreds, if not thousands, of patients for many years to come.”</p>
</blockquote>
<p>This means that the symposium, a result of five years of planning, because of the current pandemic, might be lost short of a strong fundraising outlook.</p>
<h3 class="article-title">Clinical Trial Shutdown</h3>
<p>According to <a href="https://www.npr.org/sections/health-shots/2020/04/11/832210606/coronovirus-pandemic-brings-hundreds-of-u-s-clinical-trials-to-a-halt" target="_blank" rel="noopener">National Public Radio</a>, the coronavirus pandemic has forced hundreds of clinical trials to shut down and “about a quarter of the studies put on hold were for cancer treatment.”  Clinical trials can be a matter of life and death, and for many cancer patients, they had their only treatment option taken away because our society deemed cancer researchers nonessential.  This alone has caused all of the projects The Cure Starts Now had in the pipeline to be pushed back nearly 3-6 months.</p>
<blockquote>
<p>“When you delay research by 3-6 months, it means that it won’t be there to offer hope a year down the line precisely when another child is diagnosed,” said Desserich.</p>
</blockquote>
<p>The Cure Starts Now expects a record-breaking amount of grant proposals this summer and doesn’t want to turn away promising grants that could hold the key to curing all cancers.  Still, with a lack of funds right now, it might unfortunately happen.  Donations during this difficult time can help The Cure Starts Now by allowing us to say “YES” to the very best in cancer research.</p>
<p><a href="/who-we-are/mission/" title="Mission"><span class="button">Learn More About the Homerun Cure</span></a> <a href="#" title="General Donation"><span class="button">Donate Today</span></a></p> https://thecurestartsnow.org/news/covid-19s-impact-on-grant-funding/ Fri, 15 May 2020 08:58:45 -0500 https://thecurestartsnow.org/9046