Advocacy in Action: Progress for Kids with Brain Tumors

Thanks to the tireless efforts of families, survivors, and advocates, two landmark bills—the Accelerating Kids’ Access to Care Act (AKACA) and the Mikaela Naylon Give Kids a Chance Act (GKAC)—have passed the U.S. House of Representatives with overwhelming bipartisan support.

These bills are transformative for children with brain tumors and rare diseases, removing barriers to critical care and fast-tracking the development of life-saving treatments.

• AKACA eliminates delays in life-saving treatment for critically ill kids on Medicaid who need to cross state lines for specialized care.
• GKAC accelerates new drug development for rare pediatric diseases like brain tumors, ensuring more treatment options for kids who need them most.

We are deeply grateful to all incredible advocates in the PBTF community and beyond who shared their stories directly with Congress to make this victory possible.

At the Pediatric Brain Tumor Foundation, we’re thrilled to see incredible momentum after years of hard work—and it’s all thanks to advocates like these inspiring individuals:

Charlie: A 14-Year-Old Brain Tumor Survivor
Charlie delivered a powerful testimony to the Senate Finance Committee, urging lawmakers to support the Accelerating Kids’ Access to Care Act (AKACA). Having sought specialized care across multiple states, Charlie spoke from the heart about how this bill would help families avoid delays in life-saving treatment.We’re so proud of Charlie and grateful to Senators Debbie Stabenow and Chuck Grassley for amplifying his voice.

Caleb: A Brain Cancer Survivor and Advocate
During PBTF’s 2025 Action Days and Virtual Day of Action, Caleb shared his story with legislators to push for both the Give Kids a Chance Act (GKAC) and AKACA. His advocacy highlights the urgent need for faster drug development and barrier-free access to care—giving kids like him every chance to thrive.

Jake Decola: Vs. Cancer Coach and Advocate
As the men’s lacrosse coach at Albion College and a dedicated Vs. Cancer participant Jake got involved with PBTF after one of his players was diagnosed with a brain tumor. Since then, he has formed relationships with local patient families and continued raising funds to support critical research. For two years, he’s joined our Virtual Days of Action to amplify the call for these critical bills on behalf of PBTF families.

Ann and John Feminella: Turning Grief into Advocacy

After losing their son Joseph, Ann and John found solace in PBTF’s emotional support programs. Last year, they turned their pain into purpose by attending the Alliance for Childhood Cancer’s Action Days for the first time, meeting with Congress to champion these bills and honor Joseph’s memory.