FA advocate Kyle Bryant rides again for Team FARA and our community

If there were a Mount Rushmore of Friedreich’s ataxia (FA) advocates, it would depict four action shots of Kyle Bryant. Kyle, 42, is a trailblazer in the FA community, and his positive, encouraging attitude is infectious.

I’m lucky to call Kyle one of my good friends; he’s the person who first inspired me to get involved in FA advocacy. (Like me, he has the condition.) His wild idea to participate in the Race Across America (RAAM) — a cycling race that extends from Oceanside, California, to Atlantic City, New Jersey — is documented in the 2015 movie “The Ataxian” (free to watch on YouTube).

One might think Kyle’s crazy cycling adventures would be over almost a decade later, but one would be wrong. He has another adventure on the horizon. (My working title for it is “The Ataxian 2: Elevation.”) I asked him about it via email; excerpts from our conversation follow.

ML: In 2010, you completed RAAM. Tell me about your upcoming adventure.

KB: So, in 2010, the four-man Team FARA (for the Friedreich’s Ataxia Research Alliance) completed the Race Across America. It was a 3,000-mile bike relay race across the country, and the team rode 24 hours a day for eight and a half days. One teammate was on the road at a time — me, Sean Baumstark, Mike Mellott, or John Lockwood. We’d each ride X miles and then trade off with another rider, leapfrogging from ocean to ocean.

In 2018, with another team, I rode to the top of the highest paved road in North America. In 2022, I did a 700-mile off-road ride in Montana and Idaho. Then, in 2023, I rode to the top of the highest paved road in the Northeast. I love the pace of climbing and the grit required.

In June 2024, we will ride to Umling La in the Himalayas, in India. This 200-mile ride starts at 11,000 feet and ends at over 19,000 feet.

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What made you choose this road out of all the roads in the world?

I Googled, “What’s the highest paved road in the world?” The result was Umling La, and I started to form an idea. Around this time, at the FARA Energy Ball fundraiser in October, I had lunch with Colin Meyer, a former executive at Reata Pharmaceuticals, the pharmaceutical company now owned by Biogen that developed the first approved treatment for FA, Skyclarys (omaveloxolone). I told him I was thinking of riding to the top of the highest paved road in the world, and he said, “Cool, I want to go.”

(Many people say that; I think most people are just looking for adventure.)

He asked for the dates a week later, and I told him June. I was still wondering if he was serious. A week after that, he told me he had booked his flights.

So now it was happening. Colin and I started having regular meetings to iron out all of the trip’s details. We added teammates, including Sean Baumstark, John Hartigan, Brian Griggs, Mike Bryant, and Steve Bryant.

Because we had an opportunity to raise awareness of FA and funds for FARA and further FA research, we decided to make it a Team FARA fundraiser, now open to donations.

Why did you choose to embark on this adventure?

I don’t want to leave anything on the table in this life. If I can use that sentiment to benefit FA research, that’s even better.

Maybe it’s because you’re my friend, but I’m pretty sure this idea involves pushing your own limits. Is that the case, or am I completely off?

You’re right on. Sean and I (co-hosts of the “Two Disabled Dudes” podcast) have discussed this with Colin. You don’t know where the limits lie until you get close to them. We tend to plan every aspect of our lives so we don’t cross those lines, but I love the danger of approaching them.

In your view, is this a continuation of your efforts in ‘The Ataxian,’ or is this a totally new project for you?

I think of it as a continuation. Since that first empowering pedal stroke in a parking lot in Chico, California, in 2005, all my bike rides have been a continuation. I have been following that feeling ever since, and I want to continue to use it to benefit the FA community.

How can my readers and I follow your journey?

Follow my Instagram to track our progress!

***

Kyle, without you, my little victories would be a lot smaller. Thank you for taking the time for this interview and for being crazy and always pushing the limits. The FA community is better because of you, and I am, too.

Note: Friedreich’s Ataxia News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Friedreich’s Ataxia News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Friedreich’s ataxia.