News About The Cure
Collaborating for the Cure
January 29, 2018
Founded by The Cure Starts Now in 2011 in an effort to unify the DIPG cancer community, the DIPG Collaborative today is a unique initiative where independent foundations work together to fund the best cancer research available with the advice of The Cure Starts Now Foundation’s Medical Advisory Council. The following is an article by one of the Foundational Partners of the DIPG Collaborative in support of the cause.
Julian was not the first 4-year-old who imagined himself a brave knight or a superhero. But he sure was one of the best at it. With big dark eyes, raspy voice and huge imagination, watching our handsome guy bring his characters to life was a joy. He wore underpants over his pajamas “because that’s how Superman and Batman wore theirs.” He loved a good battle - classic good guy vs. bad guy stuff. But never in our wildest dreams could we imagine he’d have to face the most ruthless villain of all—DIPG.
On Thanksgiving weekend in 2010, seemingly overnight, Julian woke disoriented, lethargic and became ill. After a CT scan, doctors delivered the shocking news that they discovered a mass at the base of his brain. The only way we could think to explain to him what was happening was that doctors had just found something inside his head that made him a real life superhero. His smile came through and our mission began. Seven months later, Julian would pass away. We poured our grief into carrying on the fight Julian started and organized The Team Julian Foundation, now The Julian Boivin Courage for Cures Foundation. We knew how to plan events and raise money, but we also knew all that we wanted to accomplish could not be achieved on our own.
Still, in many ways, 2011 seems to mark a turning point in the battle against DIPG. That spring, The DIPG Collaborative held their first symposium just two months before we lost Julian. A year later we signed on as a partner joining about a dozen family foundations and an established, well-respected medical advisory council. While we were able to remain an independent foundation, we found comfort in the community of families and doctors who shared our mission, and we found peace of mind with the processes in place to efficiently fund the most promising research without doubling all our efforts.
In these last six years, Collaborative membership has flourished from 12 family foundations to more than 30. Researchers dedicated to cracking the code on DIPG has grown from those original six or so we found in 2010 to more than 50 today. Pooling our funds together, this collective of bereaved families has funded $12 million for 46 research grants around the country and the world, a shining example of strength in numbers. Due much in part to this funding, we’ve seen the dedication and tireless efforts of researchers make great strides in a short time.
The DIPG Collaborative is like an army of one working to defeat our common enemy. No matter the level of each organization's contribution, here we can leave egos at the door, lean on each other, encourage each other and propel our shared mission forward. We’ve look forward to meeting the other families annually - the most poignant moments coming when we get the chance to talk about our children and explain why and how they continue to inspire us. And every two years, we appreciate the opportunity to hear from the researchers about the progress of the work we’ve funded, realizing the Collaborative’s spirit of accountability, efficiency and sharing of ideas.
Moving forward, we hope to hear of continued and even stronger collaboration between research institutions across the globe. We hope to see drug companies willing to share drugs from their respective portfolios that could offer the magic combination for families in the fight. More than anything, we hope to see the extraordinary children we met at this last meeting showing up to attend our next meeting.
We understand DIPG is not an easy space to remain. For families like ours, any good news and breakthroughs can’t come big enough or soon enough. But consider how far we’ve come in these last six years. Despite the days we’ve wanted to give up, the memory of Julian’s courage and the community we’ve found in The DIPG Collaborative has helped us remain steadfast in the belief that we can play even a small role in bringing about a day when families no longer have to endure the words, “no known cause or cure.”
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Researcher Spotlight: Dr. Bakhos Tannous of Massachusetts General Hospital
January 9, 2018
John Mackintosh - The Cure Starts Now Massachusetts
WHY ARE YOU INTERESTED IN DIPG?
My research background is to study adult gliomas. I became interested in DIPG after witnessing the son of a dear friend of mine diagnosed with DIPG with no cure and very low survival rate.
YOU ARE STUDYING AN ANTI-MALARIA DRUG TO TREAT DIPG. WHY?
We tested many existing drugs on DIPG cells and discovered that Mefloquine is effective and potent in killing DIPG cells in all cultures tested. Mefloquine is the anti-malaria drug of choice for US Military deployed overseas and for travelers. We have preliminary results in DIPG cell cultures and mouse models that shows low dose Mefloquine restricted DIPG growth and improved their survival.
WHAT ARE THE BENEFITS OF RE-PURPOSING AN EXISTING DRUG TO TREAT DIPG?
There are several. Mefloquine has already been demonstrated to be safe for use in humans. So we do not need to prove that. It is FDA approved and available immediately for off-label use in DIPG. This will result in faster transition from bench to bed-side.
TELL US ABOUT MEFLOQUINE AND THE BLOOD-BRAIN BARRIER (BBB)
Getting drugs across the BBB to treat brain tumors in general and DIPG in particular is a big challenge. Fortunately, Mefloquine is known to cross that barrier and accumulate in the human brain. So this is a big advantage in potential DIPG treatment.
WHAT ARE THE SPECIFIC GOALS OF THIS RESEARCH BEING FUNDED BY THE CURE STARTS NOW AND DIPG COLLABORATIVE?
We will demonstrate that Mefloquine can cross the BBB, achieve the desired concentrations in the pons, halt tumor growth, and prolong survival in DIPG mouse models. These results should be sufficient to move to clinical trial with children diagnosed with DIPG.
HOW WILL YOU KNOW IF THE DRUG IS WORKING?
We are using technologies to simply light-up the DIPG tumor just like the firefly, and depending on the amount of light captured by the camera, we can see whether or not the drug is working. Basically, the less light output, the better benefit. These results are then confirmed ex vivo by removing the mice brains and looking for the tumor.
HOW WILL YOUR WORK BUILD ON PREVIOUS DIPG RESEARCH?
Our work will take advantage of DIPG cell lines and mouse models that have been developed by other leading researchers in the DIPG field. Collaborating with the broader DIPG research community will move the whole field forward more quickly.
WHY IS SUPPORT BY THE DIPG COLLABORATIVE AND THE CURE STARTS NOW IMPORTANT FOR YOUR WORK?
It is typically difficult to get federal funding for drug re-purposing. The DIPG collaborative and the Cure Starts Now will allow us to test this drug in a clinically-relevant mouse models of DIPG, and if proved successful, it can be easily translated to patients.
Researcher Spotlight: Dr. Adam Green from University of Colorado - Anschutz Medical Campus
January 4, 2018
Jesse Shumaker - Nebraska Chapter Director
Recently I met with Dr. Adam Green, a pediatric neuro-oncologist who leads a lab at the University of Colorado Cancer Center, to notify him that his grant request had been funded. Dr. Green provided background about his team and their upcoming research. Dr. Green became a DIPG investigator because he saw how DIPG is so different than other pediatric cancers due to the devastating outcome and unmet need for effective treatment. His lab searches for weaknesses in high grade gliomas such as DIPG and then explores ways to exploit those weaknesses. Dr. Green’s team has used steadily improving mouse models to try different treatments and determine what would be the most promising options to offer in clinical trials. Dr. Green and his team have brought some of these new ideas into clinical trials.
When Dr. Green attended the most recent DIPG Symposium in May of 2017, he was encouraged to hear from other researchers about progress towards control of the DIPG tumor within the brainstem, particularly by administering chemotherapy via Convection Enhanced Delivery (CED), which uses a pressurized catheter to bypass the blood brain barrier and inject the agent directly into the brainstem. While this delivery mechanism is starting to show promise for local treatment of the tumor, the most recent DIPG Symposium featured more discussion about the next concern, which is spreading of the tumor to other areas of the brain. The presentations by other researchers as well as subsequent conversations at the conference, spurred ideas that laid the groundwork for the upcoming research at Dr. Green’s lab.
One area of upcoming research at Dr. Green’s lab is the comparison of the concentrations of chemotherapy in the brain stem when administered via CED compared to oral or intravenous delivery. There are many agents that have showed promise when used against DIPG cells in the lab, but have failed to succeed in clinical trials. The aim of this research is to determine whether the problem may be at least in part due to failure of certain drugs to bypass the blood brain barrier and get to the tumor in the brain stem. This may vary depending on the type of drug and its ability to cross the blood brain barrier. This research will be performed in both mouse models and as well as through a clinical trial so it will be possible to determine how well the mouse models reflect the activity in humans.
Another aim of research is to measure the impact of the addition of craniospinal radiation in conjunction with focal radiation of the tumor. We know that radiation focused on the brainstem can be effective for a period of time, but it is not curative. As treatment of DIPG within the brainstem becomes more effective, prevention of metastasis to other areas of the brain and spine becomes a larger concern. Dr. Green’s lab will use mouse models to measure how craniospinal radiation may prevent or reduce spread of the tumor outside of the brain stem.
The goal with all of this research is to work towards a clinical trial that brings together multiple well justified treatment modalities to produce consistent, effective, and durable results for children battling DIPG.
The Cure Starts Now Foundation funds over $4 million in pediatric cancer research
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Terre Haute Tribune Star
Meet Our Friend And Hero, Carson
December 29, 2017
Carson Hall was born in January 2012 and is the first born son to his parents. Carson loves to be active! He loves swimming in the summer, playing water balloons, playing on his swing set and most of all playing with his brother, Colton. He enjoys going to school and visiting the zoo – what little boy wouldn’t! Around the age of one, he began having respiratory issues, which were diagnosed as Viral Induced Asthma. However, he was otherwise healthy. He was meeting every milestone and was an extremely happy and loving child. There was no inclination that anything was, or ever would be, wrong with him.
In April of 2016, his parents started noticing changes in Carson. His behavior was different, his gait was off and he seemed dizzy a lot of the time. After weeks of persistent doctor’s appointments and phone calls, his behavior warranted a trip to the Emergency Room. The ER doctor did not realize the severity of the symptoms he was showing and told his mother that nothing was wrong, other than possible vertigo. Fortunately, the ER trip expedited a neurology appointment. On May 11, 2016 he saw a neurologist that was concerned and ordered an MRI as soon as possible. May 12, 2016 Carson’s family received the devastating news that Carson had an inoperable tumor on his brainstem, which is almost always fatal. He had, on average, 9 months to live.
“We made an appointment for a second opinion because as parents you can’t believe someone is telling you that your child will not make it,” said Lindsay, Carson’s mom.
On May 13, 2016 the Halls learned the name of the tumor was Diffuse Intrinsic Pontine Glioma, DIPG, and the prognosis was indeed correct. Carson received the standard 30 days of radiation therapy, which was completed in July of 2016. Prior to radiation, he was unable to walk or feed himself and was also very hard to understand. Shortly after radiation, besides the side effects from the steroids, you would not know anything was wrong with him. His tumor shrank an amazing 50% and he was back to himself!
In February 2017, a routine follow up MRI showed tumor progression. At this point he was not showing any symptoms, but his family was told they would see them in approximately 6 weeks. The doctor was spot on. They started noticing increased symptoms about 6 weeks later. The Halls contacted Carson’s doctors and came to an agreement to do re-irradiation. Carson is now 17 months past diagnosis and is 100% a normal 5-year-old boy. He runs and jumps and plays. The best thing post-diagnosis that his family has done to make memories is to travel. His Make A Wish trip was a Disney Cruise and they have traveled to Mexico to go to the beach, one of his favorite things to do! He lost his first tooth and he started Kindergarten, both things they never thought they would get to experience with their son.
Carson’s mother says, “Although our future is unknown, we are choosing to live each day to the fullest. We are busy making memories that will last a lifetime no matter what our future brings. What we do know, however, is that childhood cancer is extremely underfunded. DIPG is unknown to most people. We need to raise awareness. We need to increase funding. Most of all, we need a cure. We have to continue to work together to advocate for our kids and continue to spread awareness. Not just for DIPG, but for all pediatric cancers.”