It’s a debilitating disease that robs patients of strength and mobility then shortens their lives. But this weekend in the Chicago area, they ride up to 52 miles to show there’s no stopping them until they have an effective treatment, maybe even a cure.
“I’ve been in a wheelchair for about 3 years now. All these sports were leaving my life. I loved playing golf and baseball, and I loved downhill skiing and basketball.”
The rare neuromuscular disorder known as Friedreich’s Ataxia was progressively weakening Kyle Bryant’s body, but it couldn’t stop him from cycling.
“I actually saw a guy online on a trike, and I was like, ‘Oh my gosh! I think I could do that!’ My first ride was seven miles, and I was so proud of myself. Over the next four months I built up to 100 miles in a day. I was like, sky is the limit! I gotta go huge!”
And he did. In 2007, Kyle and his father set out on a 2,500-mile, 60-day journey from San Diego to Memphis.
“We had no idea what we were doing. This disease is threatening our lives, to change everything we had thought for my life, and this is our opportunity, what do we have to lose? We were really, really empowered by that trip and decided we wanted to share that feeling with other people.”
Along the way he hoped to educate others. Lurie Children’s genetic specialist Dr. Barbara Burton says the disease starts with a gene mutation.
“The gene isn’t functioning. It’s a life shortening illness because it’s also associated with heart problems in about two-thirds of patients, diabetes in about a third, so there are a number of medical complications that accompany the disorder.”
That’s why Kyle and hundreds of others ride to support research that they hope will soon find a cure for Friedreich’s Ataxia.
“I just could not get enough of it. It was a feeling I had thought I had lost forever, and now it was back.”
Kyle hasn’t slowed down. He now devotes his time to organizing and participating in Ride Ataxia events all over the country. This weekend’s ride will take place about an hour southwest of Chicago in Channahon.
“Sunday I will ride 12 miles.”
Emily Young is just 18 years old she was diagnosed with Friedreich’s Ataxia at 12.
“In 2008, I was having a bit of trouble with balance, and I was having back problems. When I was diagnosed, my family and I decided we wanted to be very active in the fundraising community. It’s so amazing and so much fun to see everyone come together and really make a difference.”
“We know the exact cause of the disease, and so we’re able to focus our research to solve that specific problem. It’s only a matter of time.”
In the last seven years, the cycling events have raised 2.5 million dollars to support the Friedreich’s Ataxia Research Alliance. There’s still time to register for the Chicago-area event on Sunday. And there are other Ride Ataxia events throughout the year in six locations all across the country.
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