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From the CEO’s Desk: Let’s Lean In During Childhood Cancer Awareness Month

About this time last year, the National Brain Tumor Society was down in Washington, D.C. at the famous National Press Club with a number of partners and collaborators to officially announce the launch of “Project Impact: A Campaign to Defeat Pediatric Brain Tumors,” our new fundraising effort to help resource the Defeat Pediatric Brain Tumors Research Collaborative, a ground-breaking leadership effort of scientists dedicated to the pursuit of breakthrough treatments that dramatically improve the standard of care and survivorship for kids with brain tumors. At the same time, we have been deeply engaged in advocating for more robust investment by the federal government in pediatric brain tumor research.

Twelve months later, we are making progress thanks to your support and invite you to join in this month’s opportunities to make a difference against pediatric brain tumors.

David Arons (far left), Dr. Roger Packer of Children’s National Health System (center), and Dr. Suzanne Baker of St. Jude Children’s Research Hospital, at the launch of Project Impact last Childhood Cancer Awareness Month

It was about one year ago that the Centers for Disease Control (CDC) announced that pediatric brain tumor had just surpassed leukemia as the leading cancer of cancer-death in children ages 0-19. This reinforced our determination to move as quick as possible to help deliver greater hope and opportunity to the children with these tumors.  Knowing it takes collaboration to confront the toughest brain tumors on the planet, the St. Baldrick’s Foundation then joined forces to partner with NBTS in the launch of the Defeat Pediatric Brain Tumor Research Collaborative and just a few months later the Rally Foundation for Childhood Cancer Research also became a key funding partner. And we continue to welcome others.

What we believe makes the Defeat Pediatric Brain Tumors Research Collaborative so poised for success is its unique and special infrastructure. We’re not simply giving out separate grants to different researchers working on different projects, but rather pulling together teams of the best pediatric brain tumor researchers from all over the world and facilitating their collaboration. The goal will be to identify new targets and clinically testable drugs that can be quickly evaluated in clinical trials and thereby accelerate the pace of traditional drug development.  Earlier this year, NBTS began distributing initial funding to operationalize the initiative and we thank investigators and the project’s Scientific Director, Dr. Roger Packer of Children’s National Health System.

Further on the research front, we commend the Pediatric Brain Tumor Foundation and Society for Neuro-Oncology for their conferences that brought together many outstanding pediatric brain tumor researchers in June. We look forward to doing the same at our Scientific Summit in October in Boston.

And on the advocacy front…

We have waged a successful advocacy campaign for an increase in the pool of funds that pediatric brain tumor researchers may apply for through the Department of Defense and we are seeking to maintain that for fiscal year 2018. Pediatric brain tumor researchers now have $2-4 million in new dollars they can apply for.

Once again, The Childhood Cancer STAR Act, legislation that NBTS helped assemble and advocate for is all teed up to be passed by this Congress. This bipartisan bill is designed to advance pediatric cancer research and child-focused cancer treatments, while also improving childhood cancer surveillance, and providing enhanced resources for survivors and those impacted by kids’ cancers. Now is the time to weigh in to urge the Senate to pass the bill. See our Action Alert here.

David Arons (left) at the U.S. Capitol advocating for brain tumor issues during Head to the Hill 2017

Another legislative victory was the RACE for Children Act: President Trump has signed the FDA User Fee Reauthorization Act into law, which included the Research to Accelerate Cures and Equity for Children (RACE) Act. This law requires that, if pharmaceutical companies are developing a drug to treat cancer in adults, they also study the drug in children, if the molecular target of that drug is relevant to cancer that occurs in children. The intent is to increase the number of drugs being tested for childhood cancers and therefore support the discovery of new treatments, which is why NBTS supported the passage of this bill!

After much advocacy with the National Cancer Institute, we are pleased that the NCI is moving forward to launch the Pediatric MATCH Trial: The NCI-COG Pediatric Molecular Analysis for Therapy Choice (MATCH) Trial is a nationwide phase II clinical trial with multiple treatment arms to evaluate whether targeted therapies can be effective in treating children and adolescents (ages 1-21) with solid tumors – including brain tumors – whose cancer has gotten worse during treatment, or has come back after treatment. Specifically, the trial will employ a “precision medicine” approach to treatment by performing genomic sequencing on patients’ tumors, looking for more than 160 cancer-associated genetic changes, and matching eligible patients to treatments that may target specific mutations or molecular alterations driving their individual tumor.

As is always the case, the progress and developments noted above are driven by your support. Without the great support NBTS gets in terms of fundraising, volunteering, acting as an advocate, etc., we would not be able to accomplish our goals of accelerating the development of new and effective treatments – and eventually a cure – for both pediatric and adult patients.

If you want to know how you can participate with us this month, please visit our Childhood Cancer Awareness Month (CCAM) 2017 page here.

With Sincere Gratitude,

David F. Arons, JD

Chief Executive Officer

National Brain Tumor Society

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