On Tuesday, April 9th, Making Headway participated in Head to the Hill, an advocacy day on Capitol Hill to support funding for brain tumor research. The event was organized by the National Brain Tumor Society, who provided training and coordinated all office visits. Over 300 people, from nearly every state in the union, joined together to educate and lobby their own Senators and members of Congress. Almost everyone had a direct, personal connection to somebody with a brain tumor either as a parent, spouse, or as a survivor. As the group collectively prepared the day before, they shared intimate stories of grief, struggle, courage, and hope. Each participant embodied a strong passion to make a difference for those with brain tumors and Head to the Hill provided an empowering opportunity to make a difference.
Over the past 20 years, there have been astounding advances in technology and medicine. However, the complexities of brain tumors, combined with a lack of funding, have resulted in no significant new treatments for patients. There are over 700,000 people living with a brain tumor, and 30,000 of them are children. Only through appropriate national funding can scientists make impactful discoveries.
The goals of the day were straightforward. Participants would advocate for two tangible legislative actions. The first was a $2 billion increase in the overall budget of the National Institute of Health (NIH). The NIH is the most important research organization in the country. Their researchers are not political and are not trying to make any money; they just want to improve the health of all Americans. The largest part of the NIH is the National Cancer Institute (NCI), which focuses on the science, prevention, treatment, and cure for cancer. Adult brain tumors are relatively rare, compared to other types of cancer, and most pharmaceutical companies do not see potential profit in investing in this area, making funding from the NIH all the more important.
The second goal was the passage of the Childhood Cancer STAR Act. This act would expand opportunities for childhood cancer research, improve efforts to identify and track childhood cancer incidences, and enhance the quality of life for childhood cancer survivors. For pediatric brain tumor patients, it would also create a database of brain tissue samples that would encourage and improve a variety of medical research programs. The STAR Act, combined with Cancer Moonshot, will fundamentally improve the way that information is shared and medical progress is achieved.
For our part, Making Headway was there to represent the needs of children with brain tumors, as well as their parents, friends, and communities. Our New York group advocated honestly and passionately at the offices of Sen. Kirsten Gillibrand, Sen. Charles Schumer, Rep. Elise Stefanik , Rep. Nita Lowey, and Rep. Tom Reed II. We were very pleased to hear strong support from each office and are encouraged that these efforts have a chance to really help those with a brain tumor.
Making Headway was proud to be part of Head to the Hill. We are grateful to everyone who participated and for the opportunity to make so many new friends. Through our collective efforts we are making a difference, we are shaping the future, and we will find new treatments and a cure for pediatric brain and spinal cord tumors.
It is critically important for people to advocate to their members of Congress for the causes you care about. If children with brain tumors are one of those causes, please contact your Congress members to encourage their support of the NIH and the STAR act.