Join NBTS’s campaign to raise awareness about the importance of biomarker testing and clinical trials for patients with brain tumors.
READ MORE
Shawn W. never imagined his brain tumor experience would lead him to Capitol Hill, sitting across from a congressman and making a direct impact on legislation. But in May 2024, that’s exactly where he found himself — telling his story, advocating for the brain tumor community, and witnessing firsthand how personal experiences can drive real change.
When Shawn walked into his meeting with Congressman John Joyce, MD, at the National Brain Tumor Society’s Head to the Hill, he was ready to share his story as a posterior fossa (PFB) ependymoma survivor and advocate for the Bolstering Research And Innovation Now (BRAIN) Act. What he didn’t expect was just how engaged Rep. Joyce would be.
“He had done his homework, so he already knew what the BRAIN Act was,” Shawn recalled. “So when he sat down, he looked at us and said, ‘I want to know why you’re here.’ That’s when I realized I needed to tell him my story and explain why this bill mattered to me.”
Shawn spoke about his diagnosis, the challenges he faced, and how the provisions of the BRAIN Act could help patients and survivors like him. Rep. Joyce listened intently, asked questions, and expressed serious interest in signing on as a co-sponsor by the end of the meeting. In July, Rep. Joyce’s name appeared as an original co-sponsor of the BRAIN Act, a landmark bipartisan bill aimed at addressing the unique needs of the brain tumor community.
Sitting in a congressional office and advocating for critical legislation was a far cry from where Shawn had been just three years earlier, learning that he had a brain and spinal tumor.
Shawn spent years grappling with unexplained neurological symptoms — peripheral vision loss, difficulty breathing, trouble swallowing — but each was dismissed as part of aging. His body adjusted, and he carried on, unaware of the underlying cause.
Then, on his birthday in July 2021, everything changed. Driving home from the gym, he experienced stroke-like symptoms, prompting a reluctant trip to the hospital. Doctors misdiagnosed him with a brainstem stroke, and his condition continued to worsen.
Months of persistence led Shawn to get an MRI with contrast, which revealed a tumor spanning from his spine through his brainstem and into his brain. The whirlwind that followed took him to multiple hospitals for second opinions until he found a team of neurosurgeons he felt comfortable with.
In December 2021, Shawn underwent a grueling 12-hour surgery to resect the tumor. Following surgery, his brain had to relearn even the most basic functions, and his body was left with lasting effects.
“They told me I would have neuropathy, but you really don’t know what that means until you wake up,” Shawn shared. “I have neuropathy, basically neck down, so I don’t feel my feet all that much. That was hard to deal with.”
After spending two and a half weeks in the hospital dealing with complications like dangerously low blood pressure, Shawn went to inpatient rehab for three weeks. There, he learned to walk again, rebuilt strength in his hands, and retrained his blood pressure to stabilize to complete simple tasks like climbing stairs or getting into a car.
“It’s almost like I can feel my bones, but I can’t feel my skin or muscles,” Shawn said of his neuropathy. “You don’t have a lot of sensation when you walk, so you’re trusting that you are moving in the right direction.”
Progress was slow and frustrating at times, but Shawn pushed himself, determined to regain his independence.
After his surgery, Shawn began attending NBTS’s Brain Tumor Support Conversations — a monthly virtual support group for patients and loved ones.
“I never really talked in the sessions, but I listened, and it helped me deal with my stuff and got me involved with NBTS,” Shawn said.
Once Shawn and his wife successfully ran a half marathon nine months after his surgery, Shawn knew he wanted to do more and applied to run as a Gray Nation Endurance® athlete in the NYC Half Marathon and raise money for NBTS.
“The motivation was to run in the city where I had my surgery,” Shawn said.
And 13 months after he had to relearn to walk, Shawn did just that, running 13.1 miles with neuropathy in his feet and raising $10,000 for NBTS.
“The experience running the race was amazing,” Shawn said. “If you’ve never run a half marathon in a place like New York City, I can’t even explain how motivational it was to see people holding up signs and then have the opportunity to run across the bridge into the city. It was tremendous.”
For Shawn, advocacy was the natural next step in his journey, leading him to Head to the Hill. The idea of meeting with lawmakers felt daunting, but he told himself that if he could just connect with one representative, the experience would be worth it. With his sister Stephanie by his side, he arrived uncertain but open to the experience.
“I was apprehensive going in,” Shawn shared. “On the first day, meeting people and learning about what we were there for was great. I began learning about the BRAIN Act, and I started to see the aspects that meant a lot to me, and it was very reinforcing to why I was there.”
Looking back at the experience, Shawn is grateful for the community he found at the event.
“I call myself a Petri dish because my tumor is so rare,” Shawn said. “But when I went to Head to the Hill, and I met people that actually had my surgery done in the same area, it made me feel normal because they had the same symptoms I had or were dealing with the same stuff I am at this point.”
What started as apprehension heading into Head to the Hill turned into empowerment, and Shawn left knowing that his voice mattered. Now, he encourages others to take that same step, reminding them that they don’t have to be experts — just be willing to share their stories.
“If you’re passionate about brain tumors and want to learn more and get involved, Head to the Hill is a great place to do it,” Shawn said. “You’re going to meet amazing people you can bond with and who have gone through the same thing you’ve gone through. I would encourage you to tell your story because people want to hear it, and it has an impact on our representatives, our senators, and the people involved.”
Be a voice for the brain tumor community in your state!
This May 4-6, 2025, join brain tumor advocates, including Shawn, from across the country for the 15th annual Head to the Hill in D.C. to meet with your representatives in Congress, share your story, and advocate for better policies and more federal funding to fuel brain tumor research.
Anyone impacted by a brain tumor is welcome: no previous experience is needed, and you won’t be alone — our NBTS staff and seasoned advocates will provide both training and support.
Make your voice heard and register today.
TAGGED WITH: Head to the Hill, Ependymoma