As we kick off 2026, we want to highlight our collective efforts in 2025, to share the key progress we have made together in advocating for the brain tumor community’s public policy priorities, and to briefly outline some of the important work that still lies ahead.
This past year, our national network of volunteer advocates “leaned in” despite an unusually turbulent and challenging political environment, showing commitment and determination through online and direct advocacy – including at Head to the HillⓇ and Advocate From Your StateⓇ. Advocates also answered our calls to action regarding various issues – including securing/restoring federal funding for medical research, increasing support of the BRAIN Act, advancement of childhood cancer legislation, and to ensure ongoing delivery of vital pediatric brain tumor research and patient services in the face of programmatic changes at the National Cancer Institute (NCI). All together, a record 7,313 advocates completed our online action alerts in 2025. Thank you!
During our in-person Head to the Hill and online Advocate From Your State advocacy days, over 500 volunteers across 46 states and D.C. shared their stories with Congress to advocate for policy priorities that support the brain tumor community, such as the landmark BRAIN Act, medical research funding, a childhood cancer package, and brain tumor awareness resolutions. Those stories were amplified by nearly 2,000 additional advocates across the country, who sent over 5,000 emails to Congress.
These advocacy efforts and ongoing calls to action have led to substantial growth in the number of senators and representatives who’ve cosponsored or otherwise signaled their support for the BRAIN Act, the Accelerating Kids’ Access to Care Act, and the Give Kids A Chance Act – critical pediatric cancer bills that passed in the House of Representatives and are pending final action in the Senate. As we enter the second session of the 119th Congress, you can continue to support these efforts by visiting our Action Center today.
In late August, we learned that NCI made the decision to discontinue funding for the Pediatric Brain Tumor Consortium (PBTC), the agency’s only program dedicated to early-phase clinical trials for children with brain tumors. National Brain Tumor Society, in collaboration with nearly 4,500 advocates and nonprofit partners, sent a petition to reinforce with the NCI the critical function of the PBTC, to urge reinstatement of the program, and to underscore our community’s expectations regarding continuity of services historically provided by the PBTC.
NBTS staff and advocates also participated in many partner advocacy events last year, including with the Alliance for Childhood Cancer, Rally for Medical Research, Patient Quality of Life Coalition, and National Organization for Rare Disorders. Finally, we kicked off an Advocacy Leadership and Advisory Council in the fall and are excited to engage this small group of long-time, highly-engaged advocates to enhance our grassroots advocacy program. Please look for more information coming to our website soon.
In 2026, we will work to build upon last year’s advocacy to increase support for the BRAIN Act, the pediatric cancer bills, and other priority legislation, as well as urge for increased medical research funding under the Department of Defense (DoD) and National Institutes of Health (NIH). To this end, our messages and “asks” have gained traction in Congress and are largely reflected in the still pending Fiscal Year 2026 bills that fund DoD and NIH. So while Congress passed a Continuing Resolution (CR) to fund the government through January 31, 2026 at Fiscal Year 2025 levels, we continue to call on advocates for Congress to pass a full budget for Fiscal Year 2026 this month that includes the brain tumor community’s funding priorities in lieu of any additional CRs. And while we push to get Fiscal Year ‘26 funding priorities successfully across the finish line, work will soon begin in earnest on Fiscal Year 2027 appropriations bills on which we will once again need an assist from our dedicated advocates.
It is important to note that there are also ongoing negotiations in Washington around health care reforms – including efforts to extend expired enhanced subsidies for people who are covered by insurance plans sold on marketplaces under the Affordable Care Act (ACA). NBTS is closely monitoring developments, and we continue to advocate that any policies enacted ensure affordable, accessible, and adequate health care for brain tumor patients.
NBTS is humbled by and grateful for your partnership and commitment to public policy advocacy on behalf of the brain tumor community. Together, we have and will continue to spark positive change for patients living with a brain tumor today – and all those diagnosed in the future. We look forward to Head to the Hill in May and another year of passionate and engaged advocacy to fight for a cure to end brain tumors once and for all.
