When Kyle Bryant was diagnosed with Friedreich’s Ataxia (FA), a rare, progressive neuromuscular disorder, at age 17, he knew he had to do something, so he did the thing he knew best: he got on his bike.
He spent the first few years after his diagnosis challenging himself to achieve new personal records in cycling, both as a way of coping and proving to himself that he could still do what he put his mind to.
By the time he was 26, after riding from San Diego, CA to Memphis, TN, Kyle’s passion became so much more. That’s when the idea for rideATAXIA, a program of the Friedreich’s Ataxia Research Alliance (FARA), got wheels of its own. Kyle began organizing rides to fund FA research for his organization that now has locations in five states and plans rides across the country.
“Hearing there’s no treatment or cure was a huge blow, so cycling and fundraising became our therapy— how we dealt with the disease and continue to deal with it,” Kyle says. And even though Kyle had to trade in his standard bike for a more handicap-accessible Catrike 700 model, it hasn’t slowed him down.
The same gumption with which Kyle started rideATAXIA also led him to begin participating in clinical trials. In his early twenties, Kyle volunteered for his first trial; and while the inpatient study required him to stay in a hospital bed and get his blood drawn up to four times a day, he didn’t mind.
He references a saying in the FA community that the cure to the disorder is a “puzzle” – all of the pieces are out in the world but it’s up to the community of researchers, patients, families, and supporters to put them together. Sitting in that hospital bed giving blood, Kyle says, was his piece of the puzzle.
Kyle continues participating in trials, trying out new drug and therapy treatments. And although his personal health doesn’t always improve, he always considers his participation valuable.
“There’s a chance that these drugs could be therapeutic for me, but that’s not why I participate. I participate because I want to push the science forward. There is no way to get these trials done without participants. Even if these drugs aren’t helpful for me now, it will help find something in the future,” he says.
Participating in research gives Kyle hope, not only for himself but for future treatments and a potential cure for the disease that he’s built his life around fighting.
And he’s fighting alright— saying moderation “keeps us from reaching the extreme points of our potential.” And for someone who uses a wheel chair but still bikes cross-country and works out in a gym, he means it.
Already this year, he has biked up Mt. Evans, the highest paved road in the U.S., and says a European cycle tour could be next. As for clinical research, he will continue placing his piece in the puzzle, one rideATAXIA fundraiser and clinical trial at a time.
For more information about Friedreich’s Ataxia and rideATAXIA, please visit www.curefa.org.
To learn more about Kyle’s story, visit his website at www.kyleabryant.com.
UPDATE, January 2016: Kyle is honored and excited to be speaking at the third annual 2016 Patients As Partners conference in Philadelphia, PA this March. He will be speaking on a panel about patient networks and support programs. To hear from Kyle, along with other patients and clinical research professionals, register for the 2-day conference by visiting the Conference Forum webpage for more information.
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