Improving children’s survival and quality of life
National Brain Tumor Society is committed to achieving breakthroughs in pediatric brain tumor treatment and quality of life.
Defeat: Accelerating Treatment-Focused Research on Pediatric Tumors
- NBTS’s Defeat Pediatric Brain Tumors Research Collaborative brought together leading childhood cancer experts from around the world that fostered team science and data-sharing. Together, the team:
- Helped better understand the potential of non-invasive techniques to detect and monitor pediatric brain tumors
- Developed new models in which to study pediatric brain tumors
- Began testing potential new drug candidates in these new laboratory models of childhood brain cancer
- In 2020, NBTS teamed up with StacheStrong to provide funding for a forthcoming pilot clinical trial at Mount Sinai Hospital evaluating a personalized approach to immunotherapy in high-grade glioma patients, including children.
- The CERN Foundation, a program of the National Brain Tumor Society, provided its 2020-2021 Robert Connor Dawes Scientific Fellowship to Dr. Sriram Venetti’s lab at the University of Michigan, which focuses on targeting childhood ependymoma by interrupting metabolic pathways.
- In 2021, the NBTS Research Roundtable program hosted a meeting that brought together leading experts in pediatric brain tumor research with FDA, NIH, and biopharamas to innovate clinical trials and better utilize patient data.
Connect: Uniting the Pediatric Brain Tumor Community
NBTS connects the brain tumor community and provides resources to help better inform and prepare patients and their caregivers to access specialized treatment.
- The NBTS Personalized Support and Navigation Program — a service provided by an experienced team, including a highly-skilled medical professional — ensures a patient and/or caregiver receives individualized attention, support, and information. This program has served numerous families facing a pediatric brain tumor diagnosis.
- Similarly, NBTS offers a host of initiatives, such as Meditation Mondays and journaling workshops for adults and children, that help families impacted by a pediatric brain tumor diagnosis cope with stress and grief.
- As part of our Informed in 30 video series, NBTS teamed up with childhood cancer expert Dr. Mariella Filbin of Dana-Farber Cancer Institute and Boston Children’s Hospital for an educational session on innovations in pediatric brain tumor research and development.
- Staff from NBTS serve as representatives from the pediatric brain tumor community on two leading childhood cancer advocacy coalitions, the Alliance for Childhood Cancer and the Coalition Against Childhood Cancer (CAC2). NBTS co-chairs the Alliance’s Policy Committee.
- National Brain Tumor Society and the CERN Foundation serve as disease champions within the Pacific Pediatric Neuro-Oncology Consortium (PNOC) Ependymoma Working Group. This multi-institutional, international, and collaborative group is working together to advance treatments for pediatric ependymoma.
Change: Improving the Pediatric Brain Tumor Treatment & Research Environment
NBTS and its volunteer advocates helped influence the federal government to:
- Provide $115 million for the Peer-Reviewed Cancer Research Program of the Department of Defense for FY21, a $5 million increase over FY20, and ensured brain cancer, pediatric brain tumors, and pediatric, adolescent, and young adult cancers were once again included as eligible priority research topics for funding.
- Allocate $30 million to fully fund the Childhood Cancer STAR Act for a third consecutive year.
- Secure $50 million to fully fund the Childhood Cancer Data Initiative (CCDI) for a second consecutive year.
- Secure $42.934 billion in funding for the National Institutes of Health (NIH) for FY21, a $1.25 billion increase over FY20, and $6.559 billion to the National Cancer Institute (NCI), a $119.5 million increase.
In addition, in partnership with our advocates, NBTS:
- Persuaded Congress to extend important incentives for the development of treatments for pediatric rare diseases including brain tumors through the Creating Hope Reauthorization Act.
- Advocated successfully with the NCI to extend funding for Project HOPE (High-Grade Glioma-Omics in Pediatric and AYA) — collaborative, intersecting research projects that use single-cell RNA sequencing to learn more about tumor heterogeneity, growth, and evolution— by $2 million in 2021. This effort aims to identify commonalities in these complex tumors that can serve as new therapeutic targets and the basis for future combinations of treatments.
- Continued support for the Gabriella Miller Kids First Research Act 2.0, which provides funding for a pediatric disease research initiative within the NIH.
- Advocated with other groups for a resolution designating an official DIPG Awareness Day in the United States.
- Is championing the Credit for Caring Act, which would help parents and families of pediatric brain tumor patients defray the costs associated with serving as a caregiver. The bill would provide a nonrefundable tax credit for family caregivers, which can be applied to incurred caregiving expenses greater than $2,000.
NBTS also ensures the pediatric brain tumor voice is represented at the highest levels and most critical junctures of our nation’s biomedical research funding system:
- NBTS’s CEO sits on the Childhood Cancer Data Initiative’s Steering Committee.
- NBTS’s Chief of Community & Government Relations sits on the Center for Disease Control Childhood Cancer STAR Act advisory group.
- NBTS’s Chief of Community & Government Relations is a member of the NCI’s Pediatric and Adolescent Solid Tumor Steering Committee.
- NBTS ensured that the pediatric brain tumor community was represented at an FDA “listening session” with advocates to offer insights and ideas to improve access to clinical trials during COVID-19.
- NBTS has for years, and continues to, nominate pediatric brain tumor research advocates to serve on review committees for grants from the Peer-Reviewed Cancer Research Program of the Department of Defense.
Ways To Support
Together, we can create change that will last a lifetime. Take action for pediatric brain tumor patients this month by signing up to become an advocate, joining or starting an event, or setting up a fundraiser in honor of a loved one.
Pediatric brain tumor patients need more — more research, more treatments, and more time. Share your story to show others that they are not alone and to create change for our most vulnerable patients.
MAKE A GIFT
Your support is critical to ensuring the urgent, unmet needs of the pediatric brain tumor community continue to be heard and addressed. When you make a one-time or sustaining gift to NBTS, you have an immediate impact on the important work underway to conquer and cure brain tumors—once and for all.