Skip to content
BACK to Stories

Advocating for the BRAIN Act

Published on October 9, 2024 in Share Your Story

Guest Author: Shawn W. of Gettysburg, PA

Shawn’s daughter cheers him on at the NYC Half Marathon

After my brain tumor diagnosis in 2021 and subsequent surgery, I had to learn how to walk again. Fourteen months later, I was running a half marathon to raise funds for the National Brain Tumor Society through Gray Nation Endurance.

I started to expand my involvement into advocacy work and was extra excited to learn that, following my meeting with him during Head to the Hill, Congressman Dr. John Joyce signed on to the BRAIN Act as an original co-sponsor. I was actually on my way home from a successful MRI when I heard the news. 

Among other important provisions, particularly those that would foster the development of better treatments, I’m encouraged about the aspects of the bill related to care for survivors, as I know firsthand the challenges that follow a brain tumor diagnosis. 

I’m very thankful that Representative Joyce took my experience to heart and is supporting survivors through the BRAIN Act.

  • Image 1 of 4 | Shawn W. and his sister Stephanie S. participated in the 2024 Head to the Hill to advocate for the urgent, unmet needs of the brain tumor community.
  • Image 2 of 4 | Brain tumor advocates Brian S., left, and Shawn W., center, met with Rep. Dr. John Joyce at the 2024 Head to the Hill to talk about the BRAIN Act and other important policy priorities for the brain tumor community.
  • Image 3 of 4 | Shawn (second row from the top, third from the right) found community at Head to the Hill where he joined other brain tumor survivors and advocates to urge Congress to take action.
  • Image 4 of 4 | Shawn ran the 2023 NYC Half Marathon as part of the Gray Nation Endurance team to raise funds for the National Brain Tumor Society.

TAGGED WITH: advocacy, Ependymoma

Opinions expressed within this story belong solely to the author and do not reflect the views or opinions of the National Brain Tumor Society.

Stay Informed & Connected