"It felt like we had all won a 4x100 relay gold medal."
From left: Dave, Dale, Jason
That’s how Dale described the moment he stood alongside David and Jason — three individuals living with schwannomatosis — captured forever in a photo taken at the 2024 NF Summit hosted by the Children’s Tumor Foundation.
For each of them, it was one of the first times they had ever met someone else with the same rare condition. And for a few minutes, as they smiled for the camera, it wasn’t about tumors, pain, or years of uncertainty. It was about pride, hope, and the power of community.
Continue reading to meet Dave, Dale, and Jason. They are a few of the incredible people whose stories are made possible by donors like you. Ready to make an impact? Donate today!
Dave
Meet Dave
David’s journey with schwannomatosis began in 1996, when doctors found a tumor at the base of his spine. He had two surgeries and radiation on the tumor. After recovering from the surgeries, he came across another tumor in his right humerus. He then received a clinical diagnosis of schwannomatosis from his geneticist at the University of Pennsylvania in 2000. It wasn’t until a tumor in his brain grew so big it was pushing on his brain stem that his schwannomatosis became a matter of life or death. His brain surgeon at the Medical University of South Carolina removed his brain tumor on January 6, 2017. He says about his brain surgeon, Dr. Alex Vandergrift, that “he saved my life!”
Since his brain surgery, he has been more active with his doctor’s appointments and sees Dr. Scott Plotkin at the NF Clinic at Massachusetts General Hospital on a yearly basis to follow his schwannomatosis. He has also become more active with CTF and wants to be more involved in the future.
Before the NF Summit, David had only ever connected with other patients online. Meeting Dale and Jason in person changed everything. “It was so exciting to meet Dale and Jason,” he said. “To realize that I’m not alone was an exhilarating experience.”
Dale
Meet Dale
Dale’s journey to diagnosis stretched over ten long years. After being misdiagnosed twice with degenerative disc disease, he tried to endure worsening back pain until a general practitioner finally ordered updated imaging. That led to the discovery of tumors wrapped around his spine.
A surgeon suggested the tumors might be related to NF, and after searching online, Dale found two nearby CTF NF Clinics — and a correct diagnosis: schwannomatosis.
At the Summit, Dale attended sessions with his daughter and soaked in the action-packed agenda. Reflecting on the moment he stood with David and Jason, Dale said, “I felt proud. It was like we had all won a 4×100 relay gold medal!”
He also shared that four schwannomatosis patients had been present at the Summit — their friend Rebecca among them — though she had to leave before the photo was taken. Her presence, like theirs, made the gathering even more meaningful.
Jason
Meet Jason
Born and raised in New York City, Jason now lives in New Jersey. His journey with schwannomatosis began when he was just 18 years old and started experiencing extreme pain on the left side of his rib cage.
He spent years visiting countless specialists, but no one could give him an answer — and at one point, a primary care physician even suggested the pain might be imaginary. It wasn’t until Jason was 26 that he finally received a correct diagnosis: schwannomatosis.
Since then, Jason has undergone several surgeries to remove 15 tumors from throughout his body, including the removal of two ribs. Despite increasing pain and the development of new tumors over time, Jason remains committed to living with resilience and optimism. “I try my best to take it one day at a time,” he says.
Although Jason had been a proud supporter of the Children’s Tumor Foundation for years, the 2024 NF Summit was the first time he met others living with his condition.
“It was a very emotional experience for me to meet Dale and David,” Jason shared. “There was an immediate bond and understanding between us. It was comforting to know that I wasn’t alone in this journey.”
More Than Just a Photo
For David, Dale, and Jason — and for Rebecca, a fourth schwannomatosis patient who left just before this photo was taken — the Summit wasn’t just about learning or advocacy. It was about belonging. It was about seeing, and being seen.
Together, they represented a community that many people living with rare diseases never find. They weren’t just surviving their diagnosis — they were standing tall, connected by hope, resilience, and the shared dream of a better future.
Why Your Support Matters More Than Ever
Right now, federal funding for NF research has been eliminated. That means the Children’s Tumor Foundation is the single most important force keeping critical schwannomatosis research alive.
When you give, you help power the next breakthrough. You create opportunities for patients to connect, find answers faster, and feel less alone. You make hope possible.
The future of research — and the future of moments like this one — depends on you.
