Crusade for a cure
Senior Staff Writer
When Kyle Bryant decided three years ago to raise funds to discover a cure for the disease attacking his body, he never thought it would end up as a full-time job.
But after pedaling 3,500 miles over three major cross-country trips raising $830,000 on his own, the 2000 Bear River High School graduate has been hired by the Friedreich’s Ataxia Research Alliance to keep the quest going.
“In December 2008, I went to them and said I wanted to dedicate my life to this,” Bryant said recently from his home in Sacramento. “They said they had been thinking about the same thing.”
Friedreich’s ataxia is a rare, neuromuscular disease that causes damage to the nerve tissue inside the spinal column, according to the National Institutes of Health. The degeneration of that tissue causes coordination problems, and many sufferers end up in a wheelchair.
The disease reacts differently depending on the sufferer, but many victims have shortened lives from complications such as heart problems and diabetes.
Bryant has slurred speech and a stilted gait, and he uses a wheelchair when he knows he will be going long distances.
He uses a special tricycle for the cross-country trips that got him national attention in the Friedreich’s ataxia world. The three-wheeled cycle has two wheels in front, with a third in the back on a chassis that allows Bryant to sit down and pedal.
Hired last September, Bryant is now trekking the country educating people about the disease and setting up bicycle-ride fundraisers.
“I’m trying to be the face of the organization,” Bryant said. “We’re on a fast track to a treatment, and there is a lot of optimism from the scientists for a cure in the next three to five years.
“Our goal is to slow, stop and reverse the disease, with a cure down the road,” Bryant said.
Bryant rode with his father and uncle, Mike and Steve Bryant, in 2007 on his maiden voyage from San Diego to the National Ataxia Foundation’s convention in Memphis. Even though a bad knee held him up, he managed to raise $100,000.
In 2008, Bryant and 15 friends and relatives pedaled from the steps of the California capitol in Sacramento to the convention in Las Vegas, raising $250,000.
Last year, Bryant and a group of supporters pedaled from Portland to Seattle in the rain for the convention, and their efforts raised $480,000.
Overall, Bryant’s efforts have funded six grants to research the disease.
To keep with his tradition, Bryant in June will participate in the four-man Team FARA in the Race Across America, which includes a fellow Friedreich’s ataxia sufferer. They will race from Oceanside in northern San Diego County to Annapolis, Md., in the world’s longest cycling event.
When Bryant was hired by the Alliance, he realized that many people want to contribute to causes, but do not have the time or inclination to ride hundreds or thousands of miles. With that in mind, he planned several rides across the country of 100 miles or less this year as well.
“We’ve decided to make it a weekend structure and still challenging, so people can be proud of it,” Bryant said.
The closest will be Ride Ataxia Nor Cal on May 15-16 from Folsom to Grass Valley and back, with option routes. You can register online at RideAtaxia.org/norcal.
Bryant is training for the Race Across America, and said it helps him in general to ride.
“When I don’t ride, I don’t feel as good,” he said recently. “Friedreich’s ataxia progresses no matter what, but as long as I have the power to feel better, I do.
“I feel like I’m doing good work,” Bryant said. “I’m just super fulfilled now.”
To contact Senior Staff Writer Dave Moller, e-mail email@example.com or call (530) 477-4237.
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