https://thecurestartsnow.org/news/ Get the latest news about The Cure Starts Now and DIPG research progress <p>Two years old. The age when most children are walking with ease. Jumping with two feet. Talking more. Throwing the occasional tantrum. Like a lot of kids, Kimber Jo needed a little help hitting these milestones. Every child develops at their own pace, and Kimber Jo was no different. Even at 2, she simply did things her own way. Speech therapy, occupational therapy, Kimber Jo was happily tackling them both. She’s always been a fighter.</p>
<p>One of her therapists noticed it first. Kimber Jo started struggling to use her right side. Through a whirlwind of tests and hospitals and opinions, two brain surgeries followed along with the diagnosis. Kimber Jo had a brain tumor. Pilocytic astrocytoma, an aggressive form of brain cancer.</p>
<p>Far too many families know the impact and change those words carry with them. The stress and side effects of the treatments, the rearranging of livelihoods and timetables to fulfill the demanding schedule of appointments. The anxiety of what lies ahead, and the heartbreak of knowing what may not.</p>
<p>But children have an innate resiliency, a fierce yet innocent ability to handle the kind of adversity and hardship that most adults would crumble under. This is Kimber Jo. Strength is all she knows. Courage is second nature. Faith in a future where everything will be ok is an expectation, even when the road to get there has been rife with setbacks and sorrow.</p>
<p>Now 7 years old, Kimber Jo still scrunches her nose a little when she smiles. It’s adorable and endearing, and you can’t help but want to give her a grin or a giggle right back. She’s learning martial arts from her big sister, and learning to be the big sis to her family’s new baby boy. Embracing her hair turning white, a result of her chemotherapy, crowning herself “Elsa.” She loves swimming and dancing and all things out of doors. This girl fishes and hunts like a pro. She is, in every way, fearless.</p>
<p>But she’s still fighting. The most heartbreaking part of all, Kimber Jo will always be fighting. Last summer, it was a recurrence. Last fall, the words “clearly no worse” after a scan were a sweet, soothing balm. There are sleep challenges. And tonsil surgery in May. Ongoing meds and treatments and therapies. Kimber Jo’s January scans were stable, so she and her family embrace the gloriousness of that report, the joy that comes after the waiting. She flashes her signature “thumbs up” sign. Her light has never needed permission to shine.</p>
<p>But for every scan, Kimber Jo wonders. Worries. A 7-year-old who watches and waits for every MRI result with poise. A stoic calmness that is poignant in its maturity. Again, strength is all she knows. Kids like Kimber Jo are why we do what we do. Help us get there, to ensure Kimber Jo and every other family battling these aggressive brain cancers have access to better options, more effective treatments, and ultimately, a cure. Because uncurable is unacceptable.</p>
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</div> https://thecurestartsnow.org/news/strength-in-the-waiting/ Wed, 25 Feb 2026 13:55:53 -0500 https://thecurestartsnow.org/16681 <p>The most special part of childhood is the friendships you make along the way. Kids have an unspoken language that only they understand, and when two signals find a matching rhythm, there’s absolutely nothing better.</p>
<p>From the outside looking in, it’s easy to assume that kids fighting cancer miss out on these beloved childhood experiences. What most of us don’t see is that these children are born fighters. Courage is all they know. When they set their sights on something as special as friendship, you can bet they’ll make it happen.</p>
<p>When Stella and Julian first crossed paths during a hospital visit years ago, it was plain to see they’d be fast friends. But no one could’ve guessed what an inspiration their relationship would grow to be.</p>
<p>It can be a battle just to find moments of normalcy when you’re a child fighting uncurable brain cancer. Pulled from school, separated from friends, spending the bulk of your time going from one hospital visit to the next. It’s a level of isolation that most adults can’t comprehend.</p>
<p>Kids in the fight mature at lightspeed, accessing a depth of character that creates a level of courage and emotional fortitude unseen anywhere else. They have a clear understanding of what matters most in life, and the wherewithal to chase those things with all their might. In the case of Stella and Julian, what mattered most was friendship. </p>
<p>From their first meeting in an oncology clinic playroom, to dressing to the nines for fashion shows, to countless giggles, visits, phone calls, and even Julian taking a knee for a makeshift proposal, their friendship was as pure a love as you will find. </p>
<p>Sadly, reality set in. As summer turned to fall, Julian’s tumor spread throughout his brain and spine. By the time November came around, there were no more treatment options available. He was unable to leave his bed for over a month, and even the slightest movement caused him pain. Everyone in Julian’s corner did all they could to keep spirits high, but there comes a point where the gravity of a situation becomes all too clear. Even to a 10-year-old.</p>
<p>For Stella, reality meant returning to a fight she already knew too well. After a long road of treatment, there was a season where things felt steady, where hope had room to breathe. But cancer is cruel in its unpredictability, and earlier this year Stella was forced back into treatment once again because of a second cancer diagnosis. Even so, she carried herself with the same quiet strength and resilience that personified her approach to the fight from the very beginning.</p>
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<p>The story of these two kids is one that deserved to span decades, but instead Julian took his final breath in December of last year. In his eulogy, Julian was compared to a wildflower, with all of the audacity to be exactly himself. There are no words that could express the level of heartbreak felt by every person who got to know Julian.</p>
<p>If you’ve ever loved and lost someone special, you know the feeling. Frustration and sadness combine as a pain that doesn’t end. A pain that only multiplies when the loss feels preventable. </p>
<p>We as a society have yet to discover the cure for cancers like Stella’s and Julian’s. In my mind, that is unacceptable. Government-sanctioned research dollars continue to dwindle, while families like Stella’s and Julian’s are left without options or a clear path forward. This cannot continue, and as it stands, the only people with the power to create change are individuals like you, who are as sick of this devastating disease as we are.</p>
<p>We did not tell you this story to emotionally charge you into making a donation. Rather, I wanted to lay out the true reality families in the fight are facing every day. Why? Because good people need to know. Because uncurable is unacceptable. And because Stella and Julian’s friendship is as beautiful today as it ever was.</p>
<p>If you feel called to donate to our mission, we’d be honored, and you can do so below. Thank you for taking the time to read this precious story, and we hope the light of Stella and Julian is a constant reminder of who we’re fighting for.</p>
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<p><em>This article originally appeared on <a href="https://dipg.org/" title="DIPG.org">DIPG.org</a></em></p>
<p>For families affected by <a href="https://dipg.org/facts/what-is-dipg/" title="What is DIPG">DIPG</a> and <a href="https://dipg.org/facts/what-is-dmg/" title="What is DMG">DMG</a>, progress in treatment has often felt frustratingly slow. While many experimental therapies have shown early promise, few have been able to overcome the challenges that matter most in real-world care: safety in the brain, durability of response, and the ability to target tumor cells without harming healthy tissue.</p>
<p>One area that continues to evolve is <strong>immunotherapy</strong>, particularly <strong>CAR T-cell therapy</strong>. Recent research, funded by The Cure Starts Now and the DIPG/DMG Collaborative and led by Dr. Sujatha Venkataraman at the University of Colorado Denver, focuses on refining this approach to better meet the realities of pediatric brain tumors.</p>
<p>Rather than introducing an entirely new concept, this work builds on lessons learned from earlier CAR T-cell efforts and is designed to directly address why some of those approaches struggled.</p>
<h2 class="article-title">Focusing on CAR T-Cells in DIPG and DMG</h2>
<p>CAR T-cell therapy uses a patient’s own immune cells, which are engineered to recognize specific features on tumor cells. For DIPG and DMG, this approach remains compelling because immune cells are able to reach the brain when many drugs cannot.</p>
<p>At the same time, applying CAR T-cell therapy to solid brain tumors has proven more complex than in blood cancers. Early studies demonstrated that CAR T-cells could reach tumors and generate responses, but also revealed serious limitations, including toxicity, immune cell exhaustion, and tumor relapse.</p>
<p>Dr. Venkataraman’s research team has focused on redesigning CAR T-cells to address these challenges directly.</p>
<h3 class="article-title">Learning From Early Targets</h3>
<p>An important early focus of this work was CD99, a marker found at high levels on many DIPG tumor cells. CAR T-cells engineered to recognize CD99 were able to infiltrate tumors and significantly extend survival in preclinical models, confirming that immune-based approaches could impact these tumors.</p>
<p>However, this work also revealed a key limitation. CD99 is not exclusive to tumor cells; it is also present on some normal cells, including immune cells themselves. As a result, CAR T-cells targeting CD99 began attacking one another, limiting how long they could persist and allowing tumors to eventually return.</p>
<p>Rather than abandoning CD99 as a target, Dr. Venkataraman’s research team treated this as a design problem—one that could potentially be solved through greater precision.</p>
<h2 class="article-title">Introducing Logic-Gated CAR T-Cells</h2>
<p>This led to the development of logic-gated CAR T-cell therapy, a more controlled and selective immune approach.</p>
<p>Unlike traditional CAR T-cells that activate when they recognize a single marker, logic-gated CAR T-cells require two tumor-associated markers to be present at the same time. For DIPG and DMG, these markers are CD99 and B7-H3, which are commonly found together on tumor cells but rarely found together on healthy tissue.</p>
<p>This dual-recognition system functions like a safety lock. Only when both markers are detected does the immune cell fully activate and kill the tumor cell.</p>
<p>This design improves:</p>
<ul>
<li>Specificity, reducing off-target effects</li>
<li>Persistence, preventing immune cells from destroying one another</li>
<li>Durability, lowering the risk of tumor relapse</li>
</ul>
<h3 class="article-title">What Preclinical Studies Have Shown</h3>
<p>In multiple preclinical models of DIPG, logic-gated CAR T-cells demonstrated outcomes that differed meaningfully from earlier approaches.</p>
<p>Researchers observed:</p>
<ul>
<li>Complete tumor elimination after a single low dose</li>
<li>No tumor regrowth during extended observation</li>
<li>Long-term persistence of CAR T-cells</li>
<li>Clear discrimination between tumor cells and healthy cells expressing only one marker</li>
</ul>
<p>These findings suggest that logic-gated CAR T-cells may overcome two of the most significant barriers families have seen with immune therapies: safety concerns and loss of effectiveness over time.</p>
<p>Importantly, the therapy remained effective even in models with high tumor burden, suggesting potential relevance across different stages of disease.</p>
<h2 class="article-title">Moving Toward Clinical Testing</h2>
<p>With funding from The Cure Starts Now and the DIPG/DMG Collaborative, Dr. Venkataraman’s research team has completed key early development steps, including manufacturing and regulatory preparation.<br>Plans are underway for a first-in-human clinical trial anticipated to begin in 2026. The treatment will be delivered directly into the brain using an implanted reservoir, allowing for multiple doses over time. This trial design reflects lessons learned from earlier DIPG CAR T-cell studies, where repeated dosing appeared necessary to maintain response.</p>
<p>The initial focus of the trial will be safety and feasibility, while also looking for early biological signals of activity.</p>
<h3 class="article-title">Broader Implications</h3>
<p>The logic-gated CAR T-cell platform may extend beyond DIPG and DMG. Similar strategies are being explored for other pediatric brain tumors, including aggressive forms of ependymoma.</p>
<p>In related work, researchers are also developing “armored” CAR T-cells, designed to counteract immune suppression created by certain tumors. These approaches aim to strengthen immune responses while maintaining safety.</p>
<p>The long-term goal is not a single universal therapy, but a set of immune strategies tailored to the biology of each tumor type.</p>
<h2 class="article-title">Why This Matters to Families</h2>
<p>For families, progress is measured not in headlines, but in whether research meaningfully addresses the obstacles that have limited past treatments. This work does not promise a cure — but it does represent a careful, data-driven effort to design something better based on what has been learned.</p>
<p>This research reflects a thoughtful evolution of CAR T-cell therapy, shaped by lessons learned from earlier efforts and made possible through funding from The Cure Starts Now and the DIPG/DMG Collaborative.<br>For families navigating DIPG and DMG, it represents continued momentum — and a commitment to keep pushing forward.</p>
<p><a class="btn btn-secondary" href="https://dipg.org/treatment/car-t/">Learn more about CAR-T</a></p> https://thecurestartsnow.org/news/a-more-precise-car-t-cell-approach-for-dipg-and-dmg/ Thu, 22 Jan 2026 10:37:26 -0500 https://thecurestartsnow.org/16495 
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<p>The Cure Starts Now Foundation and their partners The DIPG/DMG Collaborative today announced a $1 million research grant to support a joint project led by <strong>Seattle Children’s Hospital and St. Jude Children’s Research Hospital</strong>. The award, the foundation’s “Big Fat Grant,” will accelerate development of promising new strategies to treat <a href="https://dipg.org/facts/what-is-dmg/" title="What is DMG">diffuse midline glioma (DMG)</a>, one of the most aggressive childhood brain cancers. </p>
<p>This is the second year in a row the foundation has awarded this grant, a direct result of the generosity of its donors. This is the fourth largest grant awarded by the charity in its 18-year history. This landmark project builds on an ongoing clinical trial using B7-H3 CAR T cell therapy for DMG. </p>
<p>With this new funding, researchers will explore ways to improve the tumor immune microenvironment, preparing it to better respond to treatment. By testing pre-treatment strategies such as radiation and laboratory-validated approaches, the team aims to create conditions that allow CAR T cells to work more effectively and deliver stronger, longer-lasting responses.</p>
<blockquote>“The $1,000,000 Big Fat Grant is all about big ideas,” said Brooke Desserich, Co-Founder and Executive Director of The Cure Starts Now. “By funding this innovative work, we’re helping to push the boundaries of what is possible for children facing DMG, while laying a foundation for breakthroughs across all brain cancers.”</blockquote>
<p>The Cure Starts Now has raised over <strong>$37.5 million</strong> in cancer research and support across 80 institutions worldwide in tandem with the DIPG/DMG Collaborative. This latest grant reflects the foundation’s commitment to driving forward bold, collaborative research with the potential to unlock the universal cure for cancer.</p> https://thecurestartsnow.org/news/the-cure-starts-now-funds-1-million-big-fat-grant-to-advance-car-t-cell-therapy-for-childhood-brain-cancer/ Mon, 08 Sep 2025 13:40:51 -0500 https://thecurestartsnow.org/16033 <p><em><strong>The Cure Starts Now Commends Approval of Modeyso™ for H3 K27M-Mutated DMG</strong></em></p>
<p>Jazz Pharmaceuticals today announced that the U.S. Food and Drug Administration (FDA) has granted accelerated approval for Modeyso™ (dordaviprone / ONC201) for the treatment of adult and pediatric patients 1 year of age and older with diffuse midline glioma (DMG) harboring an H3 K27M mutation with progressive disease following prior therapy. Continued approval for this indication may be contingent upon verification and description of clinical benefit in the Phase 3 ACTION confirmatory trial.</p>
<p><a href="https://dipg.org/facts/what-is-dmg/" title="What is DMG">H3 K27M mutated DMG</a> is an aggressive brain tumor that affects an estimated 2,000 people in the U.S. each year, many of whom are children and young adults. It is often researched within a category of cancer referred to DIPG (Diffuse Intrinsic Pontine Glioma)/DMG which more narrowly affects approximately 350 pediatric patients per year within the U.S.  While DMG can expand to a broader group of patients and occur in other forms, most efforts and funding for research are initiated through private funding like The Cure Starts Now and the DIPG/DMG Collaborative.  </p>
<p>Since 2018, The Cure Starts Now Foundation has helped advance efforts to create both research and access to this unique therapy, starting first with its partnership to develop one of the first industry-patient partnerships for Expanded Access in association with the Musella Foundation, a partner in the <a href="https://dipgcollaborative.org/" title="dipgcollaborative.org">DIPG/DMG Collaborative</a>.  Further investment has come in partnership with the DIPG/DMG Collaborative towards another 7 specific research aims for this therapy.</p>
<blockquote>“We are proud to partner in the development of yet another option for families fighting DIPG and DMG cancers,” said Keith Desserich, Chairman and Co-Founder of The Cure Starts Now Foundation. “As another tool in our arsenal, we see tremendous opportunity for improved treatments, ultimately leading us to a cure for these cancers.”</blockquote>
<p>Invest in future cancer research breakthroughs at <a href="https://donate2csn.org">donate2csn.org</a></p> https://thecurestartsnow.org/news/one-step-closer-to-the-cure/ Thu, 07 Aug 2025 13:21:23 -0500 https://thecurestartsnow.org/15859 <p>For many children diagnosed with diffuse intrinsic pontine glioma (DIPG) or diffuse midline glioma (DMG), expressing their symptoms is incredibly challenging. Most patients are under the age of 10, too young to fully articulate their pain and struggles, making it harder for doctors and families to understand the disease's progression. Without the vocabulary to describe their experiences, these children struggle to communicate the changes happening in their bodies.</p>
<p>However, there are those who can speak for them. Adults battling pediatric brain cancers have become powerful voices, bridging the gap between what children endure and what the world needs to understand. Their firsthand experiences help doctors, researchers, and families gain critical insights into the disease, its progression, and its impact.</p>
<p>Lisa Kirkbride’s first noticeable symptom of DMG was numbness in her nose. “A child might say that their nose tickled. And who would ever think that something like that could turn into a brain tumor?” Lisa explained. “I believe adult cases are caught sooner because we have the language to explain our symptoms.” As one of the rare adults diagnosed with a pediatric brain tumor, Lisa understands the unique challenges faced by both patients and their families. As a mother, she empathizes deeply with parents navigating the devastating diagnosis of their child. </p>
<blockquote>“There is no hope offered. No options for treatment. But once you get connected to foundations like The Cure Starts Now, you learn there is hope, even if it is just a little bit.” – Lisa Kirkbride</blockquote>
<p>Alexa Huber was diagnosed with DIPG in 2020. As an adult patient, she knows she is an anomaly. The typical DIPG patient is between 3 and 11 years old and receives a prognosis of just 18 months. Finding support and resources can be difficult when you are an outlier. So she became the leader of The Cure Starts Now Club 22 initiative, helping create a space for adults battling DIPG/DMG to connect and provide updates and support specific to them.</p>
<blockquote>“The Cure Starts Now has been incredible in accepting and including the adults with DIPG in their plans for research. They have given us a platform to speak directly to researchers, and that has opened up opportunities for adults to join clinical trials that were previously inaccessible to us because of age limits,” – Alexa Huber </blockquote>
<p>Lisa and Alexa are among the brave individuals who have turned their own journeys into platforms for change. Despite facing the relentless challenges of their own diagnoses, they have dedicated themselves to raising awareness and advocating for research. Their mission is not just about fighting for their own survival, it’s about finding a cure for the countless children who don’t have the words to express their pain. Lisa and Alexa are proof that a single voice can make a difference, but together, with The Cure Starts Now, their voices echo even louder for the children who need them most.</p> https://thecurestartsnow.org/news/being-a-voice-for-our-children/ Tue, 05 Aug 2025 12:15:37 -0500 https://thecurestartsnow.org/15848 <p><em><strong>This Makes the Fifth International Chapter for the Local Nonprofit</strong></em></p>
<p>The Cure Starts Now Foundation is proud to announce its Japan chapter as the most recent to join the local nonprofit in its fight to cure cancer. </p>
<p>In June, Japan became the 56th chapter to work with The Cure Starts Now to raise funds that go toward research into childhood brain cancers that are especially aggressive and in most cases fatal.</p>
<blockquote>“Expanding internationally allows us to help a greater number of families, and also to have access to talent overseas that may help shed new light on the work being done in the fight against childhood cancer,” said Brooke Desserich, CEO and co-founder of The Cure Starts Now. “We very much look forward to improving our spectrum of expertise with researchers who have viewpoints from other cultures and countries.”</blockquote>
<p>The organization now has 51 chapters across the United States and five international chapters. This marks significant expansion since its founding in 2007 in Cincinnati after Desserich’s daughter passed away at age 6 due to a rare brain cancer called diffuse intrinsic pontine glioma (DIPG).</p>
<p>The Cure Starts Now chapters are typically started when a family affected by cancer feels motivated to help raise money toward finding a cure for childhood cancer. In most cases, Desserich says, they reach out to ask how they can become involved. Chapters are able to fundraise in honor of their friends and family without having to set up a 501(c)(3). </p>
<p>The Japan chapter has already held two events with another one in the works. Funds raised by all chapters go directly toward the foundation’s mission of pursuing cancer research on those fronts that offer the most promise. To date, the foundation's 56 chapters have helped The Cure Starts Now raise over $37 million toward research and support in collaboration with its partners. </p>
<p>“The enthusiasm of our international chapters and the passion that they bring is amazing,” said Jackie Criswell, director of Chapter and Family Relations for The Cure Starts Now. “One of the benefits of becoming a chapter is that we handle the legal side of things. The chapters are then able to focus on honoring their child. The resiliency of being able to sort through their grief speaks volumes for what these families want to do and the change they want to make.”</p>
<p>The Japan chapter got its start after the father of a child with cancer, Takao Nukui, read Notes Left Behind, the memoir written by Desserich and her husband Keith about their daughter’s cancer battle. After traveling overseas to meet in person, Nukui banded together with nine others in Japan who are also affected by cancer. Those 10 individuals now make up the board of The Cure Starts Now Japan.</p>
<blockquote>“Our goal is to find a cure for cancer,” Desserich said. “Working with chapters worldwide can help us find treatments closer to home for families who are in the fight, as well as bring even more awareness to the critical fact that learning as much as we can about childhood brain cancer may be the key to unlocking the cure for all cancers.”</blockquote>
<p>Inspired by so many children who are diagnosed with cancer, The Cure Starts Now supports over 200 fundraising events a year worldwide, from golf outings and runs to galas and festivals.</p>
<p>The Cure Starts Now has 51 domestic chapters in 24 U.S. states and five international chapters across Canada, Australia and Japan.</p>
<p>To find a chapter near you, visit <a href="/who-we-are/chapters/" title="Chapters">thecurestartsnow.org/who-we-are/chapters/</a></p> https://thecurestartsnow.org/news/the-cure-starts-now-foundation-expands-globally-with-newest-chapter-in-japan/ Thu, 17 Jul 2025 10:08:21 -0500 https://thecurestartsnow.org/15803 <p><em><strong>Donations to Cancer Research Nonprofits May Have to Take up the Slack</strong></em></p>
<p>As federal grants and funding for childhood cancer research face new challenges this year, researchers are scrambling to find alternative ways to continue their work. Because governmental spending is in a state of flux, privately funded grants are more important than ever.</p>
<p>Local nonprofit The Cure Starts Now Foundation already has received <strong>$20.2 million in funding requests</strong> from researchers this year, nearly 80% of the total amount they have funded over the past 18 years. At the same time, research funding from the government is projected to be reduced by more than 30% this year according to the Fiscal Year 2026 Discretionary Budget Request.</p>
<blockquote>“Without consistent funding, critical research can stall,” said The Cure Starts Now chairman and co-founder, Keith Desserich. “Research funding we desperately need is scarce, and it’s not always enough to keep pace with the urgent need for better treatments and a cure.”</blockquote>
<p>Researchers from 6 countries and 36 institutions submitted 50 grant proposals to The Cure Starts Now with novel concepts that could radically change how brain cancer is treated in the future.</p>
<p>“These researchers are working on groundbreaking ideas that have the potential to save lives,” Desserich said. “Their work could one day be the answer for families of children fighting brain cancer who today have little to no treatment options and no cure in sight.”</p>
<p>The Cure Starts Now is a privately funded foundation that focuses on supporting research into the rarest, most aggressive forms of cancer. Their primary emphasis is on deadly childhood brain cancers that are the most difficult to treat, with the belief that through a cure for those, it may lead to a Homerun Cure™ for all cancers. While research over the last 10 years has helped double the survival time for patients with cancer such as <a href="https://dipg.org/facts/what-is-dipg/" title="What is DIPG">DIPG</a> (diffuse intrinsic pontine glioma), the median survival range is still only 8-11 months.</p>
<h3 class="news-article">Grassroots Organizations Pick Up Where the Government Leaves Off</h3>
<p>Many of the proposals The Cure Starts Now has received are ready to begin clinical trials, building on years of foundational work. Others present visionary approaches that target cancer’s toughest forms with smarter, safer methods, from precision immunotherapies to targeted gene therapy and revolutionary radiation techniques. Researchers submitted ideas on a wide array of topics, including the following:</p>
<ul>
<li><strong>A combined CAR T-cell/FLASH radiation therapy</strong> that could result in better tumor control and fewer side effects.</li>
<li><strong>Immune system training</strong> using cutting-edge T-cell therapies that don’t require invasive biopsies, making treatment more accessible.</li>
<li><strong>RNA nanoparticle vaccines</strong> that harness the same principles as modern mRNA COVID vaccines, adapted to fight deadly brain tumors.</li>
<li><strong>Focused ultrasound and blood-brain barrier breakthroughs</strong> that improve drug delivery where it's needed most—directly into tumors.</li>
<li><strong>CAR T-cell innovations</strong> designed not just to attack cancer but to work smarter, last longer, and reach deeper.</li>
</ul>
<blockquote>“These studies have the potential to change the landscape for families battling cancer,” Desserich said. “We are at a point where the great strides we’ve made in cancer research could come to a standstill. Funding is crucial for us to continue our work of furthering research so that we can learn as much as possible and give children with these deadly cancers a chance to survive.”</blockquote>
<p>In the last three years, The Cure Starts Now has funded over $7.4 million in research—one-third of what they are being asked to fund in 2025 alone.</p>
<p>To make a donation, visit <a href="https://donate2csn.org">donate2csn.org</a></p> https://thecurestartsnow.org/news/with-government-spending-in-flux-groundbreaking-cancer-research-is-at-risk-of-being-underfunded/ Mon, 07 Jul 2025 12:09:56 -0500 https://thecurestartsnow.org/15783 <p><em>This article originally appeared on <a href="https://dipg.org/blog/a-new-way-to-switch-off-dmg-how-dr-tsai-is-targeting-foxr2/" title="A New Way to “Switch Off” DMG: How Dr. Tsai Is Targeting FOXR2">DIPG.org</a></em></p>

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<p><strong></strong></p>
<p></p>
<p><a href="https://dipg.org/facts/what-is-dmg/" title="What is DMG"><strong>Diffuse midline gliomas (DMGs)</strong></a> are among the most aggressive pediatric brain tumors—and they’re notoriously difficult to treat. But thanks to new research led by <strong>Dr. Jessica Tsai at Children’s Hospital Los Angeles</strong>, scientists are exploring a way to “switch off” the cancer itself—right at the source.</p>
<h2 class="article-title">What’s Being Targeted? FOXR2</h2>
<p>At the heart of this breakthrough is a gene called <strong>FOXR2</strong>. This gene normally stays off in healthy brain tissue—but in DMG, it gets mistakenly turned <strong>on</strong>, driving the growth of cancer cells.</p>
<p>Dr. Tsai’s team discovered that a small upstream section of DNA called <strong>Exon -3 </strong>which acts like a light switch for FOXR2. If you can block this section, you can turn FOXR2 <strong>off</strong>, and in turn, <strong>stop the cancer cells from growing</strong>.</p>
<blockquote>“We’ve shown in many ways that if you block this region, not only do you turn off FOXR2—you actually kill the cancer cells that depend on it,” Dr. Tsai explained.</blockquote>
<h2 class="article-title">Why This Is a Game-Changer</h2>
<p>FOXR2 isn’t active in normal brain tissue—only in the cancer—making it an <em>ideal target</em>. That means treatments that block FOXR2 could come with <strong>fewer side effects</strong> than traditional chemotherapy or radiation.</p>
<h2 class="article-title">Delivering the Treatment: Tiny RNA Packages</h2>
<p>A major challenge in treating brain tumors is the <strong>blood-brain barrier</strong>, which blocks many medications from reaching the tumor. To solve this, Dr. Tsai’s lab is using <strong>lipid nanoparticles</strong>—tiny “cars” made of fat that can cross this barrier.</p>
<p>Inside those nanoparticles? <strong>Small interfering RNAs (siRNAs)</strong>—tiny bits of genetic material designed to block Exon -3 and shut down FOXR2.</p>
<blockquote>“You can put things in the nanoparticle, like siRNAs, and send it straight into the tumor.”</blockquote>
<h2 class="article-title">What’s Happening Now?</h2>
<ul>
<li><strong>In the lab</strong>: The team is optimizing dosage and timing—figuring out exactly how much of the treatment is needed and how effectively it kills DMG cells.</li>
<li><strong>In animals</strong>: They’ve created mouse models of DMG using real patient-derived tumor cells and are preparing to test the nanoparticles <em>in vivo</em>.</li>
<li><strong>Adding antibodies</strong>: The team is engineering the surface of the nanoparticles with antibodies to help them <em>find and stick to</em> the tumor cells more effectively.</li>
</ul>
<h2 class="article-title">What’s Next?</h2>
<p>This project has multiple exciting directions:</p>
<ul>
<li><strong>Delivery methods</strong>: Options like IV injections or direct infusion into the brain are being explored.</li>
<li><strong>New cargo types</strong>: They’re testing other gene-silencing tools like <em>antisense oligonucleotides</em> and even <em>CRISPR</em> to find the most effective “cargo” to load inside the nanoparticles.</li>
<li><strong>Fast-track to translation</strong>: If the nanoparticles prove safe and effective in animal models, Dr. Tsai believes this could move into <strong>human trials quickly</strong>.</li>
</ul>
<h2 class="article-title">Why It Matters</h2>
<p>This research is a perfect example of what happens when bold ideas meet real funding. By combining genetics, nanotechnology, and targeted delivery, Dr. Tsai’s team is pioneering a treatment that doesn’t just fight cancer, it <strong>switches it off</strong>.</p>
<blockquote>“It’s only because of your support that this is even possible,” said Dr. Tsai. “And we’re incredibly grateful.”</blockquote>
<hr>
<p>This grant was funded by The Cure Starts Now and DIPG/DMG Collaborative thanks to donors like you. <strong>Fund further progress at <a href="https://donate2csn.org">donate2csn.org</a></strong></p> https://thecurestartsnow.org/news/a-new-way-to-switch-off-dmg-how-dr-tsai-is-targeting-foxr2/ Thu, 05 Jun 2025 10:50:19 -0500 https://thecurestartsnow.org/15721 <p>This year, Caps for the Cure week was destined to be something special across the Wyoming, Ohio school district. With schools buzzing with creative activities and teachers leading meaningful discussions about childhood cancer, a powerful message began to emerge: <strong>kids have the power to help other kids</strong>. Through something as simple as wearing a cap or coloring in a hat, students were learning that they could make a real difference in the lives of children battling brain cancer.</p>
<p>Among the hundreds of young hearts inspired that week, one stood out with astonishing clarity. His name is Oscar, a 9-year-old boy whose compassion moved beyond words and into profound action.</p>
<p>After learning about The Cure Starts Now and the mission to find a cure for childhood brain cancer, Oscar did something extraordinary. He emptied his savings, <strong>all of it</strong>. With a total of $120, every dollar he had carefully earned and saved, Oscar made a decision. Not influenced by his parents. But from a place of pure, selfless empathy.</p>
<p>Along with his donation came a <a href="/media/kt1iyodm/june_oscars-letter-2.jpg" title="Oscar's Letter" target="_blank" rel="noopener">handwritten letter</a>, as heartfelt and direct as only a child’s could be:</p>
<blockquote>“Hi, This is Oscar. I am donating $120 to [The Cure Starts Now] foundation. This is my own money, not my parents. I like [the] idea of this money [going to help] kids with brain cancer. Spend this money well. Sincerely, Oscar”</blockquote>
<p>Oscar, we promise, it is being spent well!</p>
<p>Because of your generosity, more than an hour of research into curing childhood brain cancer can be funded. You didn’t just give money, you gave hope, you gave time, and you gave a piece of your heart to children who need it the most.</p>
<p>Oscar’s mom shared, “He very much wanted to give this money, even though we tried to convince him to just give some. It was important to him to give it all.”</p>
<p>What kind of world might we live in if more of us loved as fiercely, gave as freely, and believed as deeply as Oscar?</p>
<p>It’s kids like him that remind us why we fight, and why we will never stop. Because childhood brain cancer steals futures. But thanks to Oscar, and every young donor like him, we're one step closer to reclaiming them.</p>
<p>Join Oscar. Give what you can. Share his story. Because no child should have to fight cancer alone. And no gift is ever too small when it comes from the heart. <a href="https://donate2csn.org">Donate2csn.org</a></p> https://thecurestartsnow.org/news/a-heart-bigger-than-his-years-oscars-gift-to-kids-fighting-brain-cancer/ Tue, 27 May 2025 12:42:22 -0500 https://thecurestartsnow.org/15685 <p>In 2023 Dr. Eric Thompson of Chicago Medical Center and Washington University proposed an innovative study focused on two compounds and how they might better cross the blood-brain-barrier for Medulloblastoma. <a href="/research/research-and-grants/university-of-chicago-medical-center-2023-11-07/" title="University of Chicago Medical Center: 2023-11-07">This project was approved for funding</a> by The Cure Starts Now and here are the results:</p>

<div class="embed-container"><iframe src="https://www.youtube.com/embed/jPSPyX7_IVk" frameborder="0" allowfullscreen=""></iframe></div>
<p></p>
<p>Treating brain cancer in children remains one of the biggest challenges in modern medicine. One major roadblock? The brain itself. It has a powerful defense system known as the <strong>blood-brain barrier</strong>, which acts like a security gate—keeping harmful substances out, but also stopping many helpful medications from getting in.</p>
<p>But a new study is giving researchers hope that we might finally have a way to get past that gate.</p>
<p><strong>The Problem: Promising Drugs That Can’t Reach the Brain<br></strong>Two cancer-fighting drugs, <strong>asciminib </strong>and <strong>nilotinib</strong>, have shown promise in killing <strong><a href="https://medulloblastoma.org/medullo-facts/what-is-medulloblastoma/" title="What is Medulloblastoma?">medulloblastoma</a> </strong>cells in lab settings. Medulloblastoma is the most common malignant brain tumor in children, and current treatments haven’t changed much in decades.</p>
<p>The catch? These drugs are blocked by a protein called <strong>P-glycoprotein</strong>, which is part of the blood-brain barrier. It works like a bouncer, pumping out medications before they can reach their target.</p>
<p><strong>The Breakthrough: Adding the drug, Tariquidar<br></strong>Researchers wondered: what if we could <strong>turn off</strong> that blocker?</p>
<p>Enter tariquidar—a compound that blocks the action of P-glycoprotein. In this study, scientists tested what would happen if they combined tariquidar with asciminib or nilotinib.</p>
<p>The results were exciting.</p>
<ul>
<li><strong>More drug in the brain</strong>: Tariquidar helped both drugs reach the brain in significantly higher amounts without increasing dosing.</li>
<li><strong>Longer-lasting effects</strong>: The drugs stayed in the body and the brain much longer when combined with tariquidar.</li>
<li><strong>Stronger cancer-killing power</strong>: Lab-grown medulloblastoma cells were significantly more likely to die when treated with the combination than with the drugs alone.</li>
</ul>
<p><strong>Why This Matters<br></strong>This could represent a major step forward in pediatric brain cancer treatment. Using tariquidar to enhance the delivery of existing cancer drugs could enhance their effectiveness, without the need to invent entirely new therapies.</p>
<p><strong>What’s Next?<br></strong>The study’s authors call for further research, including clinical trials, to explore how these combinations perform in human patients. If successful, it could open up new treatment avenues not just for medulloblastoma, but potentially for other brain cancers as well.</p>
<p>You can help make that future possible. <a href="https://donate2csn.org" target="_blank" rel="noopener"><strong>Donate today</strong></a> to support groundbreaking research like this and bring us one step closer to a cure for childhood brain cancer.</p>
<hr>
<p><strong>This study was supported by The Cure Starts Now</strong>, a nonprofit dedicated to finding a cure for pediatric brain cancer by funding innovative, high-impact research.</p> https://thecurestartsnow.org/news/breaking-barriers-a-new-strategy-to-boost-brain-cancer-treatment-in-children/ Tue, 13 May 2025 13:33:48 -0500 https://thecurestartsnow.org/15636 <p>Brock was just seven years old when he was diagnosed with Diffuse Intrinsic Pontine Glioma (DIPG), an aggressive and inoperable brain tumor. During his seven-month journey, those closest to him, his older sister Jenna, his childhood friends, and his community, watched helplessly as the disease slowly stole his ability to walk, talk, and laugh the way he once did. When Brock earned his angel wings, he left behind heartbreak and a spark that would grow into something remarkable.</p>
<p>Eight years later, that spark ignited into action. Now teenagers, Jenna and friends Luke, Giselle, Jaida, and others have carried Brock’s memory with them. In 2023, they decided it was time to do something more. Fueled by love, grief, and determination, they formed the <strong>Team Brock Junior Committee (TBJRC)</strong>. This youth-led branch of the <a href="/who-we-are/chapters/texas-austin-round-rock-team-brock/" title="Texas (Austin - Round Rock) Team Brock">Texas (Austin/Round Rock) Team Brock Chapter of The Cure Starts Now</a> had a clear mission: raise funds, raise awareness, and empower our kids to keep fighting, to face any obstacle with courage, and to believe they have the power to change the world if they don’t like what they see.</p>
<p>Melissa Fleming, Brock’s mom and director of the Team Brock Chapter, watched this group of students come together with purpose. “Although we are guiding the kids,” she said, “they have created this committee, set the goals and standards, and put in the hours.”</p>
<figure style="float: left !important; clear: both; margin-left: 0px; padding-bottom: 0px; padding-right: 5px;"><img alt="" src="/media/24lgql3u/tbjrc-gog.jpeg"></figure>
<p>And the hours added up. From organizing twenty-six Gold Out Games across 15 schools, to plunging into freezing water for fundraising challenges, or wrapping each other like mummies for laughs and donations, TBJRC brought their energy and creativity to the fight. They met with local leaders, spoke at school events, and discovered how they could make a difference in the fight against cancer. </p>
<p>For Luke Collins, now Chair of TBJRC, the work is deeply personal. “Brock was like my cousin,” he shared. “When he got cancer, I was only eight. I didn’t understand how kids could even get cancer. It didn’t make sense that doctors couldn’t just fix him.”</p>
<p>Vice Chair Giselle Cantu remembers the shift too well. “Brock was my brother’s best friend. I saw him as a healthy, fun-loving boy, and then I saw him during his diagnosis. I joined this committee not just for Brock, but for all the kids fighting. Every child deserves a joyful, passionate life.”</p>
<p>Melissa sees the impact not only in the community but in the committee members themselves. “I’ve watched them grow in confidence and leadership. I don’t want Brock’s battle to weigh them down emotionally. I want it to show them that when something knocks you down, you get back up and you change it.”</p>
<p>And change it they are. Since launching, the Team Brock Junior Committee has raised over <strong>$24,000</strong> to fund research and spread awareness. But it’s more than the money. It’s the movement. It’s the t-shirt fundraisers, the water balloon fights, the school board presentations. These students are leading with empathy and purpose, inspiring not just their community, but other schools across Texas.</p>
<blockquote>“The most rewarding part of all this,” said Jaida, the committee’s volunteer coordinator, “is knowing that we are making a real impact. This is our legacy. Every inch of ground we’ve gained, no matter how small, is changing lives.”</blockquote>
<p>The Team Brock Junior Committee is proving something powerful. Youth-led change is not only possible, it is unstoppable. They are carrying Brock’s legacy forward one step at a time and showing the world that the next generation is not waiting for change. They are leading it.</p>
<div class="row" style="border: 0;">
<div class="col-lg-4 col-md-6 order-lg-1 order-2">Members of the 2024 Team Brock Junior Committee: <br>Jenna Fleming, Former Chair, Social Media Chair<br>Luke Collins, Chair<br>Giselle Cantu, Vice Chair <br>Morgan Marks, Social Media Chair<br>Jaida Covington, Volunteer Coordinator <br>Caitlin Benningfield, Secretary<br>Andrew Collins, Gold-Out Game Co-Chair<br>Jessica Tran, Gold-Out Game Co-Chair<br>Daniel Howard, Treasurer<br>Audrey Clements<br>Carly Collins<br>Lily Farkas<br>Reese Hertel<br>Sebastian Holt<br>Meghana Nandigam<br>Abby Rackley<br>Ava Terbay</div>
<div class="col-lg-8 col-md-6 order-lg-2 order-1 mb-2"><img alt="TBJRC" src="/media/pirgmzxj/tbjrc.jpg"></div>
</div> https://thecurestartsnow.org/news/team-brock-junior-committee-a-youth-led-mission-to-cure-cancer/ Mon, 12 May 2025 16:01:59 -0500 https://thecurestartsnow.org/15632 <p>In the quest to cure cancer, we know that hope alone isn't enough; it is action that moves us forward. It’s families, researchers, and supporters coming together to take bold steps toward curing brain cancer. Because government funding is so uncertain, we are not leaving our children’s futures to chance. No matter what, we are continuing to lead where others hesitate.</p>
<p>This year, that leadership takes a powerful form: 18 groundbreaking grant proposals submitted to our <strong>Big Fat Grant (BFG)</strong> program, our largest call for funding. Researchers from <strong>16</strong> institutions have come forward with ideas that could radically change how we fight brain cancer, collectively requesting nearly <strong>$17 million</strong>. The urgency is real, and the potential is extraordinary.</p>
<p>These aren’t just theoretical ideas. Many proposals are ready to begin clinical trials, building on years of foundational work. Others present visionary approaches that target cancer’s toughest forms with smarter, safer methods, from precision immunotherapies to targeted gene therapy and revolutionary radiation techniques.</p>
<p style="padding: 0; margin: 0;" class="text-center d-none d-md-block"><img alt="Grant Approval Process" src="/media/smgl53w3/grantapprovalprocess_flowchart_web-01.png" style="max-width: 80%;"></p>
<p>Among the highlights:</p>
<ul>
<li>A <strong>diet-based therapy </strong>that deprives tumors of nutrients they need to grow, in combination with a cancer drug.</li>
<li><strong>Immune system training</strong> using cutting-edge T-cell therapies that don’t require invasive biopsies, making treatment more accessible.</li>
<li><strong>RNA nanoparticle vaccines</strong> that harness the same principles as modern mRNA COVID vaccines, adapted to fight deadly brain tumors.</li>
<li><strong>Focused ultrasound and blood-brain barrier breakthroughs</strong> that improve drug delivery where it's needed most—directly into tumors.</li>
<li>And a wave of<strong> CAR T-cell innovations</strong>, designed not just to attack cancer but to work smarter, last longer, and reach deeper.</li>
</ul>
<p>Each of these 18 proposals represents hope for the families who have lost their children and for families waiting for their miracle. But none of this work moves forward without funding.<br>At The Cure Starts Now, we are powered by a global community that refuses to accept the status quo. We fund what others won’t. We prioritize the toughest cancers in the smallest patients, because our kids deserve a fighting chance.</p>
<p><strong>You Can Be Part of the Cure</strong></p>
<p>This moment calls for bold generosity. If you've ever asked what you can do to help fight childhood cancer, this is it. Your donation directly fuels clinical trials, novel therapies, and scientific breakthroughs. Every dollar brings us closer to answers, to cures, and to hope fulfilled. We’re not waiting. We’re funding the future. <a href="https://donate2csn.org">https://donate2csn.org</a></p> https://thecurestartsnow.org/news/18-bold-ideas-one-shared-hope/ Tue, 06 May 2025 09:33:11 -0500 https://thecurestartsnow.org/15592 <p>In 2023, two Cincinnati families were thrust into an unimaginable reality that no parent should ever have to face. Their sons, just toddlers at the time, were both diagnosed with the same rare and aggressive brain cancer: Ependymoma. In the midst of their personal battles, these families became more than caregivers. They became advocates, warriors, and a united force in the fight for a cure.</p>
<p><strong>Wyatt Reber</strong> was just 3½ years old when his family began noticing symptoms that seemed mild at first. A few episodes of dizziness, some headaches, and occasional vomiting raised concern, eventually prompting an MRI. That scan changed everything. Almost immediately, Wyatt was rushed into surgery, marking the beginning of a long and grueling journey. His days quickly became filled with MRIs, countless medications, port accesses, dressing changes, eye gels, and patches. Through every moment in his battle, his parents, Alexa and Matt, remained in awe of their gentle, sweet-hearted, cowboy hat-wearing little boy.</p>
<p>Just seven months later, and only 30 minutes away, another family would join this heartbreaking journey. <strong>Wyatt Thomas</strong>, a 4-year-old with a love for the Bengals football team, was also diagnosed with Ependymoma. His parents, Amanda and Jared, suddenly had to learn an entirely new world. They had to figure out how to explain to their young son what it meant to "kick cancer’s butt" and help him feel brave as he took his "sleepy medicine" before MRIs.</p>
<p>Early in their journeys, both families were shocked to learn how few treatment options existed for children with this type of cancer. Despite how devastating and frequent childhood brain cancer is, research remains tragically underfunded. The lack of options wasn’t just discouraging. It was unacceptable.</p>
<p>Now, two years later, the Reber and Thomas families have embraced a new mission. They are no longer just fighting for their own sons. They are fighting for every child who receives a brain cancer diagnosis. Through advocacy, fundraising, and community outreach, they have become champions for change. Their goal is to fund critical research, raise awareness, and advocate for better treatments with the ultimate hope of finding a cure.</p>
<p>Their story is one of heartbreak, resilience, and relentless hope. Because no family should walk this road alone, and every child deserves a future.</p>
<p>Join the their fight with your donation, <a href="https://donate2csn.org">donate2csn.org</a></p>

<div class="embed-container"><iframe src="https://www.youtube.com/embed/y6c6cHk7GCc" frameborder="0" allowfullscreen=""></iframe></div> https://thecurestartsnow.org/news/from-diagnosis-to-determination/ Wed, 30 Apr 2025 12:08:15 -0500 https://thecurestartsnow.org/15571 <p><strong>The Cure Starts Now Shines Bright for Childhood Brain Cancer Research</strong></p>
<p><strong>CINCINNATI, OH | April 15 </strong>— On a night full of glitter, glam, and game show excitement, the Cincinnati community once again proved just how powerful it can be when united for a cause. The 18th annual Once in a Lifetime Gala, presented by Graeter’s, brought over 900 people together in dazzling style to support one mission: ending childhood brain cancer.</p>
<p>More than just an auction and fundraiser, the event brought together supporters and families whose children have battled brain cancer, honoring more than 60 kids from across the country in a powerful celebration of hope for a brighter future. From laughter-filled moments to heartfelt tributes, the evening struck a perfect balance between joy and purpose.</p>
<p>Thanks to the generosity and passion of everyone involved, an incredible <strong>$775,000</strong> was raised for childhood brain cancer research and support. This money will fuel hope, advance research, and bring us closer than ever to a world without cancer.</p>
<blockquote>"We have hope that one day we will find a cure for brain cancer. No kids fight alone, and we won't stop funding research until all kids have the chance to be cancer-free," said guest speaker, Amanda Thomas, and mom to 6-year-old Wyatt battling brain cancer.</blockquote>
<figure style="float: left !important; clear: both; margin-left: 0px; padding-bottom: 0px; padding-right: 5px;"><img alt="Randi Rico" src="/media/itkltyy2/randi-rico.jpg" style="width: 250px !important;"></figure>
<p>A highlight of the night was the presentation of the <strong>Changemaker Award</strong>, a powerful tribute to four remarkable individuals whose unwavering dedication has helped move the needle in the fight for the Homerun Cure™. Whether they’re promoting events, volunteering their time, or taking the mic as emcees, <strong>Rani Rico, Brian Thomas, Amanda Orlando, </strong>and <strong>Tommy Palmer</strong> exemplify what it means to go above and beyond to honor the legacies of our kids.</p>
<p>Inspired by the incredible Lauren Hill, a Cincinnati legend who captured the nation’s heart with her love of basketball and her courageous fight for a cure for brain cancer, the <strong>Full Court Press Award</strong> honors individuals who go beyond raising awareness to drive real, impactful change in cancer research.</p>
<p>We were proud to present this prestigious award to <strong>Indiana Governor Mike Braun</strong> for his tireless efforts in advancing the Promising Pathways Act, a critical bill that has the potential to fast-track life-saving treatments for children facing terminal and rare diseases. Every child deserves a promising pathway to treatment, and Senator Braun’s leadership is helping turn that hope into a reality.</p>
<p>Reflecting upon the event, co-founder and CEO, Brooke Desserich commented,</p>
<blockquote>“Every single person in that room is helping change how our kids fight cancer. I am incredibly grateful for the love, generosity, and commitment of this amazing community.”</blockquote>
<p></p>
<p>A heartfelt thank you goes out to our generous sponsors who made this unforgettable evening possible: Graeter’s Ice Cream, Cincinnati Children’s, <strong>The Party Source, Abstract Displays, Bruce and Nancy Axmacher, Cincinnati Santacon</strong>, and <strong>The Hyde Park Blast</strong>. Their commitment and generosity fuel the fight and inspire hope in every child, every family, and every researcher on the front lines.</p>
<p class="text-center"><span class="button"><a href="https://events.thecurestartsnow.org/once-in-a-lifetime-gala/" target="_blank" rel="noopener">Purchase Gala Tickets</a></span></p>
<p class="text-center"><br><em>Watch the powerful story of two Wyatts in the Cincinnati area battling the same diagnosis and the bond it has created:</em></p>

<div class="embed-container"><iframe src="https://www.youtube.com/embed/y6c6cHk7GCc" frameborder="0" allowfullscreen=""></iframe></div>
<p></p> https://thecurestartsnow.org/news/sparkles-smiles-and-support/ Thu, 24 Apr 2025 12:03:48 -0500 https://thecurestartsnow.org/15533 <p>The Australian Children's Brain Cancer Conference is a pivotal annual event developed by the Children’s Brain Cancer Centre, the Children’s Hospital Foundation, and The Cure Starts Now Australia that is dedicated to advancing research, treatment, and support for children affected by brain cancer. Held in March, 2025 in Brisbane, Australia, this conference brought together leading scientists, medical professionals, and advocacy groups to collaborate on innovative solutions to improve survival rates and quality of life for young patients.</p>
<p>Brain cancer remains one of the deadliest forms of childhood cancer, with limited treatment options and significant long-term impacts. The conference aims to bridge the gap between research and clinical application by fostering discussions on cutting-edge therapies, including precision medicine, immunotherapy, and targeted drug treatments. Experts also share insights on early diagnosis, clinical trials, and supportive care for families navigating this challenging journey.</p>
<blockquote>"This annual conference not only gives Australian researchers and partnering advocates a chance to collaborate but also is a window into the larger leadership role that Australia is serving on the worldwide stage," says Eleni Millios-Hullick, CEO of The Cure Starts Now Australia.</blockquote>
<p>A key feature of the event is the emphasis on collaboration. Researchers, policymakers, and patient advocacy groups work together to accelerate progress in understanding and treating childhood brain cancer. The conference also provides a platform for families and survivors to share their experiences, ensuring that research remains patient-focused.</p>
<p>By uniting the brightest minds in the field, the Australian Children's Brain Cancer Conference plays a crucial role in driving breakthroughs that bring hope to children battling this devastating disease.</p> https://thecurestartsnow.org/news/australian-childrens-brain-cancer-conference-advancing-research-and-treatment/ Mon, 07 Apr 2025 12:50:14 -0500 https://thecurestartsnow.org/15277 <p>We know that childhood cancer is more common than most people realize. Nearly two children per school will be diagnosed with cancer before they graduate. Every day, 47 families hear the words no parent ever wants to hear: "Your child has cancer." And for 1 in 4 of those children, the battle will be with brain cancer, the deadliest form of childhood cancer.</p>
<p>But here’s the thing—no one fights alone. Leading the charge in the fight for a cure are the elementary school kids who watch their friends battle cancer without getting better. The siblings who witness the treatments and heartbreak their families endure. These kids are proving that making a difference is easier than you think. We’ve created simple yet powerful ways for communities to come together, honor their loved ones, and take real action in the fight for a cure.</p>
<h3 class="article-title">Caps for the Cure</h3>
<p>Super Nova was a bright light at Nelson Elementary, always ready with a smile and a love for learning. When she was diagnosed with a rare brain cancer at just four years old, she never let it dim her spirit. Nova’s friends wanted to help, but what could a group of elementary school kids do? The answer: something small but powerful.</p>
<p>The school started hosting Caps for the Cure—students could wear their favorite hats to school in exchange for a small donation toward brain cancer research. It was fun, easy, and most importantly, it made a difference. Even after Nova earned her angel wings, the tradition continues with special additions like a lemonade stand. Her friends and school are still raising awareness and funds, making sure Nova’s dream of a cure never fades.</p>
<blockquote>"There is another side to education aside from learning the core subjects. There is the education in humanity that Nelson Elementary supports and encourages. They lead by example to their students in what it means to have compassion, to take action, and to understand that they can make a difference no matter their age." – Bobbie Baker, Nova's Mom</blockquote>
<h3 class="article-title">Gold Out Games</h3>
<figure style="float: left !important; clear: both; margin-left: 0px; padding-bottom: 0px; padding-right: 5px;"><img alt="" src="/media/wzuhye5n/march-_gold-out-game-in-honor-of-bryce-caldwell.jpg" style="width: 250px !important;"></figure>
<p>For Bryce and his brothers, baseball wasn’t just a sport—it was their favorite way to spend an afternoon. When Bryce was diagnosed with DIPG, his local high school team welcomed him and his brother Tyler with open arms, making them honorary team members. Their love for the game and the support of those athletes gave Bryce strength in the hardest moments of his battle.</p>
<p>Now, Bryce’s memory lives on every time his brother Tyler steps onto the field. His high school team carries on Bryce’s legacy through Gold Out Games—special games dedicated to raising money for childhood brain cancer research. They even sell "Gold Game Treats" like cupcakes and cookies, turning every bite into a step toward a cure.</p>
<blockquote>"Raising money for The Cure Starts Now is so important to our family. We couldn't save Bryce, but honoring him by raising funds to find a cure for other children gives us hope and a purpose as we navigate our grief and life without him." – The Caldwell Family</blockquote>
<h3 class="article-title">You Can Make a Difference, Too</h3>
<p>These incredible kids and their communities prove that helping doesn’t have to be hard. Whether it’s hosting a Caps for the Cure day at your school, organizing a Gold Out Game with your local sports team, or simply spreading the word, every action gives our families hope and support.</p>
<p>This fight needs all of us. So what can you do today to help? Get involved, start a fundraiser, and show the world that The Cure Starts Now.</p>
<p>Start your fundraiser: <a href="/how-to-help/fundraise/" title="Fundraise">thecurestartsnow.org/how-to-help/fundraise</a></p> https://thecurestartsnow.org/news/kids-taking-action-in-the-fight-for-a-cure/ Tue, 04 Mar 2025 09:39:45 -0500 https://thecurestartsnow.org/15052 <p>In the face of growing uncertainty, we find ourselves in a critical moment where your help is needed more than ever. <strong>Groundbreaking cancer research</strong>—the kind that holds the potential to save lives—is at risk of being underfunded this year by federal sources, and the children who need it most are already waiting for hope. This is why private funding of research, like that done by The Cure Starts Now, is vital.</p>
<p>Built by a community of families, we have witnessed children fight brain cancer with little to no treatment options and no cure in sight. As parents and advocates, we know <strong>too well</strong> the frustration and heartbreak that comes with hearing that our kids aren’t a priority.</p>
<p>It’s a reality that too many families face: the research funding we desperately need is scarce, and it’s not always enough to keep pace with the urgent need for better treatments and a cure. But we’ve also learned to expect the unexpected and have faith in incredibly generous friends like YOU.</p>
<p>As federal grants and funding for childhood cancer research face new challenges, researchers are scrambling to find alternative ways to continue their work. But the sad truth is that without <strong>consistent funding</strong>—especially from <strong>grassroots organizations like ours</strong>—this critical research can stall.</p>
<p>That’s where we come in. For 18 years, <strong>The Cure Starts Now</strong> has been dedicated to picking up where the government leaves off. We are <strong>committed to funding the research</strong> that could transform the future for children battling brain cancer.</p>
<figure style="float: left !important; clear: both; margin-left: 0px; padding-bottom: 0px; padding-right: 5px;"><img alt="Dr. Eugene Hwang Grant Presentation" src="/media/purga0zb/seyour-thumbnail.jpg" style="width: 250px !important;"></figure>
<p>In 2024, we awarded a new type of grant called the BFG (Big Fat Grant) to Drs. Eugene Hwang and Elias Sayour. This grant will help generate a vaccine for children battling DIPG/DMG by obtaining initial FDA approval to move the trial forward quickly, because we know that when your child is battling a brain tumor, there is no time to wait. Without your donations to The Cure Starts Now, there would be no product, and without the product there would be no trial.</p>
<blockquote>“Even though significant funding for the trial itself remains a need, there would be NO trial without CSN’s seeding of this important work. We are both incredibly honored by this award. Thank you all for your tireless efforts…together it is inevitable that we’ll conquer this disease on behalf of your children and everyone else’s.” – Dr. Gene Hwang</blockquote>
<p><strong>Every dollar you donate helps fund</strong> the next breakthrough, the next trial, the next discovery that could lead to better treatments, and ultimately, a cure. <strong>Your support fuels the promise we’ve made</strong> to families who are watching their children fight for their lives. Without you, this mission would not be possible.</p>
<p><em>We are asking for your <strong>dollars, your voices, your hearts</strong>—because, together, we can continue to make a difference. <strong>Every donation, no matter how small, can change a child’s future</strong><strong>: <a href="https://donate2csn.org">donate2csn.org</a></strong></em></p> https://thecurestartsnow.org/news/temporary-pause-on-federal-grant-funding-the-urgent-need-for-your-support-is-clear/ Thu, 30 Jan 2025 14:40:35 -0500 https://thecurestartsnow.org/14956 <p>Thanks to your incredible support, The Cure Starts Now and the DIPG/DMG Collaborative have funded 17 grants during the 2024 grant cycle! That's 17 opportunities to make groundbreaking strides toward curing cancer.</p>
<p>When we fund research, we’re not just fulfilling the dreams of our families and warriors who wish for a cure—we’re also supporting the researchers who dedicate their lives to turning those dreams into reality. We often tell our researchers that we have the easy job of raising the money, but they have the hard job of finding a cure.</p>
<p>One such researcher is <strong>Dr. Manjeet Rao</strong> of the Greehey Children’s Cancer Research Institute – UT Health San Antonio, whose <a href="/research/research-and-grants/university-of-texas-health-science-center-at-san-antonio-2024-11-26/" title="University of Texas Health Science Center at San Antonio: 2024-11-26">grant proposal</a> was accepted and funded with your generous donations. Upon receiving his grant, Dr. Rao shared his gratitude:</p>
<blockquote>“You guys [The Cure Starts Now] are doing a wonderful job... it’s just amazing, that’s what wakes me up in the morning.”</blockquote>
<p>At The Cure Starts Now, we strive to make every day worthwhile by helping researchers achieve their goals, knowing that their dreams are shared by our families: finding a cure for childhood brain cancer.</p>
<h3 class="article-title">The Challenges in Childhood Cancer Treatment</h3>
<p>When families face a childhood cancer diagnosis, they quickly learn a harsh truth: most cancer treatments weren’t designed with children in mind. Chemotherapy and radiation, developed more than five decades ago, remain the primary treatment options. These outdated methods often come with devastating long-term side effects that rob children of the quality of life they deserve.</p>
<h3 class="article-title">A Grant to Change the Game</h3>
<figure style="float: left !important; clear: both; margin-left: 0px; padding-bottom: 0px; padding-right: 5px;"><img alt="Dr. Rao" src="/media/hxbj5p5f/q1-breakout-article-dr-rao.jpg" style="width: 250px !important;"></figure>
<p>Dr. Rao’s research focuses on changing that reality of children battling <a href="https://medulloblastoma.org/medullo-facts/what-is-medulloblastoma/" title="What is Medulloblastoma?">medulloblastoma</a>, a type of pediatric cancer. His grant aims not only to block the growth of medulloblastoma cells, but also to significantly enhance the efficacy of radiation therapy.</p>
<p>“We have shown that these drugs can greatly improve the efficacy of radiation therapy. As you know, we literally fry our kids’ brains with 35 to 50 gray of radiation,” Dr. Rao explained. “We don’t have to do that. If we can just reduce the dose by 1/10th... we can not only give them quality of life, but also help with all the secondary complications that come long after they are done with their treatment. That is exciting.”</p>
<p>Exciting, indeed! Innovations like these wouldn’t be possible without the unwavering support of donors like you. Together, we’re funding research that not only offers hope for a cure but also ensures a better future for children fighting brain cancer.</p>
<h3 class="article-title">Your Donations Matter</h3>
<p>Your generosity has a direct impact on the lives of families and children battling brain cancer. By funding researchers like Dr. Rao, you are helping to advance treatments that could revolutionize the way childhood cancer is treated, improving survival rates and long-term outcomes.</p>
<p>Thank you for standing with us in the fight to find a cure. Together, we’re making dreams come true—for families, for warriors, and for the researchers working tirelessly toward a world without cancer.</p>
<p>To help fund this extraordinary research, consider becoming a monthly donor at <a href="https://donate2csn.org/monthly">donate2csn.org/monthly</a></p>
<p></p> https://thecurestartsnow.org/news/bringing-us-closer-to-a-cure/ Mon, 06 Jan 2025 14:06:01 -0500 https://thecurestartsnow.org/14884 <p>When Cara’s three-year-old son, Cameron, was diagnosed with ependymoma, her world was turned upside down. Like any mother, she was determined to do everything in her power to help her child. Cara immersed herself in research, connecting with others in online brain cancer support groups to learn as much as possible about her son’s condition.</p>
<p>It was in one of these support groups that Cara met Lauren, a mother facing a similar battle. Lauren’s five-year-old daughter, Cana, had just experienced a relapse of the same tumor that Cameron was fighting. The connection between the two mothers was immediate, and through shared experiences and countless messages, they became each other’s cheerleaders and confidants.</p>
<blockquote>"The support The Cure Starts Now offered us in their warrior program was unmatched, we never felt alone in this scary new uncharted world we were thrust into without warning." - Cara Sarubin, Cameron's Mom</blockquote>
<h4 style="text-transform: none; margin-bottom: 0; padding-bottom: 0;"><br>Shared Struggles, Shared Strength</h4>
<figure style="float: left !important; clear: both; margin-left: 0px; padding-bottom: 0px; padding-right: 5px;"><img alt="Cara and Lauren" src="/media/r4xbqisj/cara-and-lauren.jpg" style="width: 250px !important;"></figure>
<p>On one particularly challenging day, both Cameron and Cana fell ill and found themselves in the emergency room. By chance, Lauren and Cara crossed paths, both wearing Brain Cancer Warrior t-shirts, gifts from The Cure Starts Now, and a symbol of their shared fight.</p>
<p>Their bond was mirrored by the instant friendship that blossomed between Cameron and Cana. The two children brought joy and laughter to the hospital, racing tricycles up and down the halls and brightening the days of all the medical staff on the oncology floor.</p>
<p>For any parent, their journey is filled with anxiety and uncertainty. Each MRI scan brings a wave of emotions along with fear of the unknown. But in the face of these challenges, Cara and Lauren have found strength in each other and The Cure Starts Now to help shoulder the burdens that accompany every step of their journey. Driven by their commitment to funding research and helping other families, both Cameron and Cana represent The Cure Starts Now as Ambassadors in the fight for a cure.</p>
<h4 style="text-transform: none;">Your Donation Makes a Difference</h4>
<p>During Childhood Cancer Awareness Month, we ask you to join the fight against childhood cancer by donating to The Cure Starts Now. Your contributions support vital research that brings us closer to a cure and provides vital options to families like Cara and Lauren.</p>
<p>By donating today, you become a part of Cameron and Cana’s story. You stand with Cara, Lauren, and countless other families who are fighting every day for a future where hope is given to children battling cancer.</p>
<blockquote>“We are honored and excited to be part of an organization that shares our desperation to find a cure by directly funding these efforts. We’ve also been thankful for the resources, awareness, and connections for warrior families as well as their communities battling alongside of them!” - Lauren Booth, Cana's Mom</blockquote>
<p>Show our families that they are not fighting alone: <a href="https://donate2csn.org">donate2csn.org</a></p> https://thecurestartsnow.org/news/family-never-fights-alone/ Wed, 21 Aug 2024 13:18:22 -0500 https://thecurestartsnow.org/14409 
<div class="embed-container"><iframe src="https://www.youtube.com/embed/wL0lnK4i5HQ" frameborder="0" allowfullscreen=""></iframe></div>
<p>Clare (8) and Mackenzie (9) are DIPG Warriors defying the odds as they reached 6-years post-diagnosis!</p>
<h4 class="article-title">Clare, Ohio, age 8</h4>
<figure style="float: right !important; clear: both; margin-right: 0px; padding-bottom: 15px; padding-left: 5px;"><img alt="Clare" src="/media/113lcdoa/july-header-clare.jpg" data-caption="" style="width: 350px !important;"></figure>
<p><strong>Marking the 6th anniversary of diagnosis day</strong> was bittersweet for the Ronnebaum family. "We are so very lucky," wrote Clare's Mom. 6 years ago, her parents were told Clare would only have 8-11 months to live. As they celebrate her continued stable scans, they are also reminded of all the children facing DIPG who don't get to celebrate this milestone.</p>
<p>At the time of her diagnosis, there were only two clinical trials available for Clare, one being the life-saving trial funded by The Cure Starts Now. "<strong>Clare is doing as well as she is because of the research and opportunities children have today</strong>," her mom wrote.<br><br><br><br></p>
<h4 class="article-title">Mackenzie, South Carolina, age 9</h4>
<figure style="float: right !important; clear: both; margin-right: 0px; padding-bottom: 15px; padding-left: 5px;"><img alt="Mackenzie" src="/media/5fmoo5mi/july-header-mackenzie.jpg" style="width: 350px !important;"></figure>
<p>Mackenzie was a 3-year-old princess who loved Minnie Mouse when she was diagnosed with DIPG. <strong>She has moved many mountains in the 6 years since her diagnosis.</strong> Overcoming adversity and proving to be a resilient warrior, Mackenzie is flourishing. She has been able to grow up to discover new passions in Minecraft and singing along to Taylor Swift. Grateful to watch her grow up, her dad Thomas Barron writes, “We are extremely blessed that Mackenzie is NOT a statistic and we are able to continue to enjoy life WITH her.”</p>
<p>With consistent stable scans, Mackenzie and her family are still seeking a cure, knowing that their path can take a turn at any moment. “We must find a cure,” says her Dad. “Even if Mackenzie isn't a recipient, maybe she can be the one who breaks the barrier for other kids.”<br><br></p>
<h4 class="article-title">Big Miracles</h4>
<p>These remarkable young ladies are paving the way for a future filled with hope. Many other families facing this diagnosis look to them as examples of the possibilities that lie ahead. Right now, Mackenzie and Clare are among the <strong>2% of children who survive five years after diagnosis</strong>, and both have participated in trials funded by The Cure Starts Now.</p>
<p>Your donations fund essential clinical trials, giving every child diagnosed with brain cancer the chance to celebrate a lifetime of milestones.</p>
<p><br><iframe src="https://p2p.thecurestartsnow.org/2567?iframe=1" style="width: 100%; height: 200px; border: 0;" scrolling="no" id="iframe"></iframe></p> https://thecurestartsnow.org/news/little-girls-big-miracles/ Tue, 02 Jul 2024 12:45:56 -0500 https://thecurestartsnow.org/14237 <p>In their tireless pursuit of effective treatments for pediatric brain cancers, Dr. Biplap Dasgupta and his team at Cincinnati Children’s Hospital Medical Center stumbled upon an unexpected existing compound that exhibited promising results in targeting specific mutations within <a href="https://dipg.org/facts/what-is-dipg/" title="What is DIPG">DIPG</a> models. The potential of this compound to halt tumor growth would make a significant stride forward in the battle against this aggressive form of brain cancer.</p>
<p>What sets this discovery apart is its potential to expedite clinical trials for children. The compound in question has already undergone testing in adults, paving the way for accelerated trials in pediatric patients. This means that children fighting brain cancers like DIPG/DMG may soon have access to a treatment that has already shown efficacy in adult populations.</p>
<figure style="float: left !important; clear: both; margin-left: 0px; padding-bottom: 15px; padding-right: 5px;"><img alt="BIPLAB DASGUPTA" src="/media/s3uf4nrk/dasgupta-biplab.jpg" style="width: 250px !important;"></figure>
<p>We are thrilled to announce that Dr. Dasgupta has been presented with $68,250 from The Cure Starts Now to continue his critical research. This generous contribution was raised at The Cure Starts Now Once in A Lifetime Gala & Auction, held in Cincinnati, Ohio. With more than 900 people in attendance, hearts were opened to learn about the possible advancements that could come from Dr. Dasgupta's work as he spoke passionately about the importance of studying these molecules.</p>
<p>The presentation of the check was a hopeful moment, with Chapters of The Cure Starts Now who had tragically lost their children to pediatric brain cancer standing by to offer their support and solidarity.</p>
<p>As we continue our journey to eradicate pediatric brain cancer, let us draw inspiration from this milestone and renew our commitment to the cause. Together, we can turn the tide against this devastating disease and bring hope to countless families worldwide.</p>
<p><em>Learn more about this and other research grants The Cure Starts Now has funded at <a href="/research/research-and-grants/" title="Research and Grants">https://thecurestartsnow.org/research/research-and-grants/</a></em></p>

<div class="embed-container"><iframe src="https://www.youtube.com/embed/VHo5T6nR1GU" frameborder="0" allowfullscreen=""></iframe></div> https://thecurestartsnow.org/news/hope-rising-funding-progress-in-dipg-research/ Tue, 26 Mar 2024 12:25:00 -0500 https://thecurestartsnow.org/13862 <p>In the heart of a small town, nestled amidst fields and farms, there resides a special little boy named Wyatt Reber. At just three years old, Wyatt was diagnosed with ependymoma, a rare form of brain cancer. As the cherished first child of Alexa and Matt Reber, he possesses a gentle soul that radiates kindness. Though initially shy around new faces, his warmth and innocence captivate all who have the privilege of meeting him. With a protective nature towards his little sister, Wyatt embodies the essence of a loving big brother.</p>
<p>The journey that unfolded for Wyatt and his family at the beginning of last year was one marked by resilience and hope. Countless hospital visits, grueling treatments, and moments of uncertainty could not dim his determination to persevere. Wyatt found solace and joy in an unexpected place – his garden. To Wyatt, his garden is more than just a patch of earth; it is a sanctuary of healing and hope. With tender care and boundless enthusiasm, Wyatt tends to his "grow babies," as he affectionately calls the seeds he plants. He nurtures them with unwavering devotion, cheering them on as they grow and flourish under his watchful gaze.</p>
<p>In honor of Wyatt's unwavering courage, his family lovingly named this sacred space "Wyatt's Victory Garden."  Amidst the vibrant blooms and fluttering monarchs released by Wyatt himself, one can witness the enduring beauty of hope and perseverance.</p>
<p>Now that he is no longer in active treatment and continues to receive positive scans, Wyatt and his family's focus shifts towards securing a cure in their back pocket should his cancer ever reoccur.</p>
<blockquote>“The prognosis on most, if not all, recurrent brain cancers is abysmal," his mom, Alexa, wrote, "—it’s a horrifying reality we worry about every day. We’ve said over and over we want a cure in our back pocket should Wyatt ever need it. We pray he doesn't every day.”</blockquote>
<figure style="float: left !important; clear: both; margin-left: 0px; padding-bottom: 15px; padding-right: 5px;"><img alt="Wyatt Reber" src="/media/j4ed1r1c/reber_wyatt-2.jpg" style="width: 350px !important;"></figure>
<p>To support their mission, Wyatt and his family have embarked on a noble endeavor – selling the flowers from Wyatt's Victory Garden and other items at their local farmer's market. Every dollar raised will go towards funding vital pediatric brain cancer research through The Cure Starts Now, funding hope for families like theirs. “We’ve met so many families that are desperate for a miracle cure now,” Alexa wrote, “—if there’s any chance we can help move the dial towards that miracle cure, we’ll do whatever we can.”</p>
<p>As ambassadors of The Cure Starts Now, the Reber family is one of hundreds fundraising this spring, standing united in their quest for a miracle cure. For Wyatt and countless others like him, every step forward in research brings them one step closer to the miracle they so desperately seek. Through Wyatt's journey, we are reminded that even in the face of adversity, miracles can blossom – one flower, one donation, one act of kindness at a time.</p>
<p><em>To learn more about Wyatt's story, <a href="https://p2p.thecurestartsnow.org/2340">please visit his tribute page</a>.</em></p> https://thecurestartsnow.org/news/wyatts-victory-garden-cultivating-hope-in-the-face-of-childhood-cancer/ Tue, 26 Mar 2024 11:35:13 -0500 https://thecurestartsnow.org/13858 <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>
<hr>
<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>
<hr>
<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>
<hr>
<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>
<hr>
<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>
<hr>
<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 <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 <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://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://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 <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://twitter.com/Graeters"><em>https://twitter.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>
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<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 <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 <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 <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://dipg.org/facts/what-is-dipg/" title="What is DIPG">DIPG</a> and <a href="https://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 <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://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 <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://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 <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 <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 <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 <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 <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 <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 <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 <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 <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 <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 <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 <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 <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 <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 <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://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 <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>
<blockquote>
<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>
</blockquote>
<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>
<hr>
<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 <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>
</blockquote>
<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>
<hr>
<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 <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 <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 <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 <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 <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://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 <p>Every year around 200-400 children die from the incurable brain tumor, Diffuse Intrinsic Pontine Glioma (<a href="https://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>

<div class="embed-container"><iframe src="https://www.youtube.com/embed/OH0yHvo4mhE" frameborder="0" allowfullscreen=""></iframe></div>
<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 <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">
<li id="u0010" class="ce-list--remove-bullets__list-item">
<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>
</li>
<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 <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://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://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>
<p>-</p>
<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 <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 
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<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://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>
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<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>
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<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>
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<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>
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<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 <p>Every year around 200-400 children die from the incurable brain tumor, Diffuse Intrinsic Pontine Glioma (<a href="https://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