"After a heroic battle, my uncle Mike lost his life to chordoma. No one should have to go through what he did. No family should have to experience that loss. My race is an opportunity to honor my uncle’s legacy by raising money to accelerate chordoma research and improve patient care."
Kenny Brighton, Head of Philanthropy, Chordoma Foundation
When Kenny Brighton joined the Chordoma Foundation in 2019, his off hours were spent in training mode: preparing for a race involving 10 Ironman triathlons in 10 days. Then came the pandemic; race cancellations followed. Rather than let his preparation go to waste, Kenny decided to pivot, taking the event into his own hands — and legs. As we speak, he’s in the midst of a one-man “Ironman x 10” in the balmy Florida beach town where he grew up. Over 10 consecutive days, he’ll run, bike, and swim a mind-blowing total of 1,400 miles.
Update: After completing a whopping six Ironman triathlons in six days, Kenny’s race came to an end following an ankle injury. What an incredible feat! If you want to cheer him up as he heals, you can do so right this way.
Because Kenny never misses an opportunity to bolster the Foundation’s mission, he set up a Chordoma Champions page in parallel with the race, where supporters can cheer him on virtually by making a donation toward chordoma research and patient services. The page is also personal: Before joining our staff, he was made aware of the Foundation through the diagnosis, journey, and eventual loss of his uncle Mike to this disease.
“My family’s grief was immense. But connecting with others who understood our experience was healing, as was doing all we could to make a difference in the lives of people facing chordoma today,” says Kenny.
“For rare diseases like chordoma, the community has to work harder and smarter to overcome common research roadblocks and expand access to reliable information and support,” he adds. “In a community like ours, every act of generosity, no matter how large or small, truly makes an impact.”
We’re ultra proud to have Kenny in our ranks, and invite you to join us in wishing him well.
Ways to help
We know chordoma is a solvable problem. How fast it gets solved depends on the contributions of every one of us affected: whether by donating, hosting a fundraiser, or participating in research. There are lots of opportunities for each of us affected by chordoma to fuel research advances that will dramatically improve treatments and outcomes.