On May 6-7, the National Brain Tumor Society (NBTS) held its annual Head to the Hill advocacy event on Capitol Hill. This event gives brain tumor patients, their families, medical teams, and anyone interested in brain tumor and cancer-related issues the opportunity to educate their representatives about policies impacting the brain cancer community.
I’ve participated in this event virtually twice before, but this year, I attended in person. It was an incredible experience. Advocacy is genuinely enjoyable for me. You get to learn about interesting policy efforts, explore Capitol Hill, and meet many wonderful people who can relate to your experiences with this disease. Although it's high stakes because you're advocating for policies that can directly impact your life, the environment is low-pressure since you're simply there to tell your story compellingly.
This year, 325 volunteer advocates participated, holding 243 meetings with congressional offices, making it the biggest Head to the Hill event yet. We advocated for three primary objectives:
Boosting Brain Cancer Research Funding: We asked Congress for increased funding to support brain cancer research. This included funding for major health organizations (e.g., NIH, NCI) and specific projects focused on brain cancer and glioblastoma.
Passing the BRAIN Act: We urged Congress to pass the Bolstering Research and Innovation Now (BRAIN) Act, a new law aimed at improving research and treatment for brain tumors, especially those that are rare and very deadly.
Raising Glioblastoma Awareness: We requested Congress officially recognize July 17, 2024, as "Glioblastoma Awareness Day" to spread awareness about this severe form of brain cancer and honor those affected by it.
Our group of five advocates from Louisiana met with the offices of three representatives and two senators. Everyone we met was receptive to our asks and engaged in meaningful discussions about how this disease impacts our lives and what we hope increased funding and focus on brain cancer research might achieve in our lifetime.
As part of my story, I share my hope to be there for my kids' major life events like graduating high school and getting married. I also hope to be a grandparent someday. When my medical team explained my prognosis in 2019, they told me that because of my age and health, I have a great chance of benefiting from breakthrough medical developments that could extend life expectancy for my disease. I tie this hope into our asks for increased funding and research, stating directly that this can save my life. These conversations can be emotional, but that's okay because all our efforts felt meaningful and effective.
Meeting with Senator Kennedy's Office and "Alphonse"
One of the best parts of the trip was meeting three other people from Louisiana going through similar experiences. It was the first time in five years since my diagnosis that I made real connections with others facing the same challenges, and it felt amazing. I hope to stay in touch with all of them.
If you would like more information about how to advocate and support our cause, check out the Advocacy page on the NBTS website here. You can learn how to participate, including signing up for Action Alerts that make it easy to email your representatives with prewritten messages about policy efforts.
Nick