There are so many ways you can help a child with a brain or spinal cord tumor. You can volunteer at a local nonprofit, participate in fundraising events, or donate to Making Headway. But there is another thing you can do that you might not have thought of: advocate for important state and federal legislation that increases investments in research, directly helps families, or helps create a platform for future medical discoveries. Here are some examples:

The BRAIN Act (H.R.2767/S.1330) is designed to advance research, treatment, and care for brain tumor patients and survivors. It seeks to foster collaboration by creating public databases for research samples, improve patient access to clinical trials through awareness campaigns and FDA guidance, and expand support and funding for survivorship care programs. The Act addresses the unique challenges of brain tumors, which have seen stagnant survival rates compared to other cancers, by promoting comprehensive strategies from basic research to long-term patient support. 

THE ACCELERATING KIDS’ ACCESS TO CARE ACT (H.R.1509/S.752), which would reduce delays in accessing time-sensitive, specialized care out-of-state for patients covered by Medicaid by creating a pathway for providers to enroll in multiple state Medicaid programs, allowing them to provide essential, timely care to children who need it

THE GIVE KIDS AND CHANCE ACT (H.R.1262/S.932), which would address some of the most pressing research needs of children with cancer by extending research incentives, ensuring children with cancer have access to the newest cures, and guaranteeing pediatric studies happen in a timely manner.

THE CREDIT FOR CARING ACT (H.R. 2036 / S. 925) would provide family caregivers with financial relief, and help offset some of the expenses they incur when taking care of a sick child or other family member. Caregivers play a critical role in helping brain tumor patients navigate their health care journey, but often incur significant financial costs as a result. Family caregivers spend, on average, nearly 20% of their total income on caregiving activities. For families whose child is diagnosed with a brain tumor the costs are even more extreme, given that one parent usually has to quit their job to manage their child’s constant doctor and hospital visits, as well as being a fulltime caregiver. Through this legislation, families would receive a credit of up of to $5,000 to help cover all these costs.

THE GABRIELLA MILLER KIDS FIRST RESEARCH ACT 2.0 (H.R. 3391 / S.1523) redirects penalties collected from lawbreaking pharmaceutical, cosmetic, supplement, and medical device companies to pediatric and childhood cancer research. The Kids First program supports critical research into pediatric cancer and structural birth defects, and has focused on building a pediatric data resource combining genetic sequencing data with clinical data from multiple pediatric cohorts. UPDATE: Passed into law on January 4, 2025.

Childhood Cancer STAR Reauthorization Act (H.R. 7630 / S. 4120). The original STAR Act (Survivorship, Treatment, Access, Research) was passed in 2018; this reauthorization would extend its programs, providing additional years of funding for childhood & adolescent/young adult cancer research, surveillance, support for survivors, etc. Passed signed into law on January 5, 2023.

THE NYS PEDIATRIC CANCER NEUROPSYCHOLOGICAL NEEDS ASSESSMENT ACT. Pediatric cancer further complicates the need for specialized education and additional resources. While most children can return to school after their cancer treatments, the impact of toxic surgery, radiation, and/or chemotherapy cause after-effects that hinder their learning abilities. Adding pediatric cancer to disabilities covered by insurance companies will improve families’ access to specialized educational resources for their children thus reducing health inequity. The Pediatric Cancer Neuropsychological Needs Assessment Act will ensure that any pediatric cancer patient covered by insurance has access to the resources they need to succeed in school and beyond.

To learn more about this legislation, or to become a Making Headway advocation, please contact Dan Lipka at 914-238-8384 or dan@makingheadway.org.