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 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.

THE CREDIT FOR CARING ACT (H.R. 3321 / S. 1670) 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. Click here to do support this legislation.

THE GIVE KIDS A CHANCE ACT (H.R. 5416) will give children with cancer the opportunity to receive trials of two or more drugs at the same time. The legislation will authorize the FDA, at its discretion, to require companies undertaking regulatorily directed pediatric cancer trials to plan combination trials instead of single drug trials, giving kids with relapsed cancer a better chance of success. The Give Kids a Chance Act will also require biotech firms and pharmaceutical companies to pay for their pediatric cancer trials. Click here to endorse this important legislation.

THE GABRIELLA MILLER KIDS FIRST RESEARCH ACT 2.0 (H.R. 623 / 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.  Click here to join us to support this critical research act.

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.