Healthy Living

Racing Against A Rare Disease One Ride At A Time

06/06/2017 07:40pm ET | Updated June 8, 2017

Kyle Bryant was a kid who wanted the ball. He wanted in on the game and always wanted a chance to help his team win.

Growing up in Grass Valley, California he excelled at basketball and baseball, logging hours of practice with his brother and dad, his Little League coach. Around the age of 14, however, he noticed something was “off” when he had trouble throwing the ball from third base to his brother at first. As his strength and balance gradually decreased and he found himself hoping the ball would not come to him, he knew something was very wrong.

Bryant was diagnosed with a rare, neuro-degenerative disease called Friedreich’s Ataxia at the age of 17. This condition causes progressive damage to the nervous system, initially affecting balance, strength and coordination. While FA forced him to give up his favorite sports and eventually landed him in a wheelchair, it did not steal his will to play, to compete and to make a difference.

Replacing a ball and a glove with a bike and a helmet, Bryant took up cycling shortly after college and has spent the past 10 years challenging himself and others to focus on the road ahead not what they’ve left behind.

As Program Director for FARA (The Friedreich’s Ataxia Research Alliance) Bryant organizes and participates in bike rides throughout the country to raise funds and awareness for FA. This year Bryant celebrates the tenth anniversary of his rideATAXIA events.

Now based in Philadelphia, Bryant also serves as a motivational speaker at conferences, schools and fundraisers throughout the country. He has chronicled his story in TED talks, is the inspiration for an award winning documentary called The Ataxian ( theataxianmovie.com ) and reminds all who cross his path that life is not what happens to you – but how you react.

Bryant is the first to admit, however, that the sunny outlook he embodies today was not immediate. As a vibrant teen handed a grim diagnosis he experienced a time of ‘mourning’ the swift turn his life had taken and notes the toll it took on him and his family.

“FA was a burden we all had to carry,” he said, recalling how difficult it was for his parents to witness their son’s physical and emotional decline.

Mike Bryant, Kyle’s father, explained that when they first received the diagnosis he did not want to talk to anyone. “At the time there were no treatments, nothing on the horizon,” he said. Processing the effects of this disease: wheelchair, heart problems, early death, was more than he could bear. Yet he and his wife, Diane, tirelessly sought out specialists and other families affected by FA and worked to support Kyle in every way possible.

As he continued to push a body that was gradually failing, Bryant wrestled through many uphill, ‘humbling’ moments. In college at UC Davis, he rode a bike to get around but as the disease progressed this grew increasingly difficult.

“I got good at falling,” he laughs. “One time I crashed into a bike which fell into another and took out about ten in total.” Though he jokes now recalling the cartoon-like scene, he admits it was another reminder that his daily activities were ‘getting harder, at times embarrassing and potentially dangerous.’

Shortly after graduation he read about an MS patient who was training to circumnavigate the country on a bike. As he studied a photo of the man standing next to a low set, three wheeled bike called a Recumbent Trike, he thought that was something he could do. Just imagining where a bike like that could take him was the most freedom he had felt in years.

With a loan from his parents, Bryant tracked down a Trike the same day. “It was like getting a pair of wings,” he said, recalling how he kept the bike in his living room for a full week, simply admiring it “like a work of art.”

His first ride was across town to play poker with friends who could not believe he had traveled there on his own. “I felt so remarkable,” he said. “That Trike gave me a glimpse into how my life could be so very different than I thought.”

Tapping into the spirit of that gritty Little Leaguer who wanted nothing more than to catch the game winning ball, Bryant entered community bike rides, gradually upping the ante with longer and longer courses. Seven miles became twenty, twenty graduated to fifty. After completing a Century Ride through Napa Valley in 2006 he thought, If I can do that, what else can I do?

In 2007 Bryant planned to attend an Ataxia Conference in Memphis, Tennessee, when he found his ‘what else.’ Instead of booking a flight from Sacramento, he decided to ride his Trike the 2,500 miles cross country to raise funds and awareness for FA.

When Bryant first floated the idea by his parents, his mom, Diane Bryant, confesses she thought it was ‘crazy’ and ‘hoped he wasn’t serious.’ But she did not share her concerns with her son. In fact Bryant felt just the opposite and recalls only one response: “My mom said,‘OK, but I have one stipulation: I’m coming with you.’”

If FA was ‘a shared burden,’ this first ride offered The Bryant Family a unique opportunity to celebrate what Kyle could still do and to inspire others to do the same.

While Kyle and his Dad pedaled alongside each other, Diane followed in a support vehicle. As they pushed their way East, Kyle recorded their progress online. Overwhelmed by the outpouring of support from the FA community, as well as complete strangers who they met along the way, they raised $40,000 – ten thousand above their initial goal.

More powerful than the financial support, however was the dialogue this ride inspired between Bryant and all tracking his journey. By jumping on a bike and plowing ahead he held up a mirror of sorts to all struggling with a life of challenge.

When asked the most significant contribution her son has made to FA, Diane Bryant does not hesitate in her estimation: “Kyle has encouraged FA patients, and anyone he meets, to do what you can do. If all you can do is move your arms, then move your arms.”

As they fight a disease which can render the strongest of spirits powerless and alone, FA patients find in Kyle Bryant and his rideATAXIA events a reason to gather together and to focus not on what they can’t do – but to celebrate what they can: to ride as long and as far as possible.

There are six rideATAXIA events planned for 2017: SoCal, Dallas, NorCal, Chicago, Philly and Orlando, with an average of 400 participants in each and a fundraising goal of one million dollars. Since its launch, with generous backing from sponsors like Outback Steakhouse, rideATAXIA has raised over five million dollars.. RideATAXIA NorCal will take place on June 10 at Winters Community Center in Winters, CA. To support Kyle and FA research please visit rideATAXIA.org, curefafoundation.org or cureFA.org