UC Davis graduate fights Friedreich’s Ataxia

You live in Davis. You own a bicycle, or at least have ridden one recently. You were probably just riding it or are about to ride it somewhere. But what if gradually you lost that simple ability?

2005 UC Davis graduate Kyle Bryant did.

At the age of 17, Bryant was diagnosed with Friedreich’s Ataxia (FA), a disease involving degeneration of the muscles and other structures within the body that gradually make activities such as riding a bicycle difficult and eventually impossible.

“I rode a two-wheeled bike to school everyday, but FA is progressive,” Bryant said. “By the time I [graduated] in 2005, I knew that it was time to stop riding a two-wheeled bicycle.”

Despite this setback, Bryant does not let this disease prevent him from doing anything. In 2005, Bryant bought a tricycle that allowed him to continue to ride his bicycle without the difficulties and insecurities that he had before. This led him to create and participate in Ride Ataxia, a fundraiser for FA that will be held in Davis on Saturday. The event will begin at the Veterans’ Memorial Center.

“I absolutely fell in love with the freedom that came with my trike because I could finally ride around without feeling like I was going to fall over,” Bryant said.

With his new mode of transportation, Bryant and his family rode 2,500 miles across America and raised $360,000 to put toward research for FA.

“We felt so helpless, but when my family and I knew we were stuck with FA, we knew we had to take action,” Bryant said.

This success led Bryant to continue the pursuit of this cause. In 2009, he was employed by the Friedreich’s Ataxia Research Alliance (FARA) as the national spokesperson.

“[Speaking] is one of my passions, other than raising money,” Bryant said. “It has given me the ability to share my story.”

Since then, he has created a thriving fundraiser for FA called Ride Ataxia that he also participates in, which people can help raise money for by riding their bikes.

“It’s been very successful and grown tremendously just over the past couple of years,” Bryant said. “It’s been the main focus of my life, just staying fit so I can perform on a bike and participate in all these rides. It’s very important to me because it’s mine, I built it.”

There are six different rides located throughout the United States that each occur annually, including one in Davis called Ride NorCal which will occur this Saturday. There will be about 350 people riding, an increase from last year, who will contribute an estimated $100,000 to FARA.

Riders can participate in routes of varying skill level, from 15 to 68 miles long. All routes begin at the Veterans’ Memorial Center but will start at different times so they can all finish together.

“The bottom line is empowerment; that’s the reason why I ride, to feel empowered, to be in control of my health and wellbeing and to contribute to the cause that I care so dearly about,” Bryant said. “I think the ride is an opportunity for others to get involved and contribute to something really great and that’s going to help a lot of people.”

One of these people is 11-year-old Izzy Penston, who was diagnosed with FA three years ago. Izzy, her mother and her younger brother will be stationed at a pit stop along the ride while her father and 22 others for Team Izzy will be riding to support her. Izzy said she likes participating in the event.

“I get to say thank you to everyone supporting me,” she said. “It’s a good way to support FARA and it’s good exercise too.”

Izzy’s mother, Zoe Penston, said that this ride was the first time she had met others who were affected by the disease.

“It brings our community together but also brings awareness and raises money, so it’s a great thing,” Zoe said. “I just think that people should participate because we need people on our side. It’s one of those diseases where there aren’t a lot of people that are aware so the more awareness we get, the more funding we can get and the more clinical trials and research can be funded.”

The funding for a cure is Bryant’s main drive for the continuation of these rides and his persistence to participate despite his deteriorating condition.

“The Ride Ataxia is so very important to me because it is part of the solution to solving Friedreich’s Ataxia,” Bryant said. “The focus of our organization is research. Research is going on all over the world including UC Davis. It’s something we can solve and something we can find a cure for and our scientists are confident of that. This is something we know we are going to get.”

Gino Cortopassi, professor of molecular biosciences, is one of these scientists who has been researching FA at UC Davis since 1997. He said that the research done here has made a large contribution to a cure, which can be seen in the future.

“I think that there are multiple experimental therapies for FA that are very promising and I think that in the next 10 years we will have an effective therapy for FA,” Cortopassi said.

Currently, the researchers at UC Davis are working to repurpose current drugs to find a cure for FA, and Cortopassi said that they have been successful thus far.

Bryant has given $250,000 overall to the research for FA at UC Davis. He said that when he first met Cortopassi, he was given a newfound hope in a cure.

“It was the first time I really heard anyone talk about that this is a curable disease and we actually can get this,” Bryant said.

FARA and the fight for a cure for FA has become a large part of Bryant’s life, and Bryant said he hopes that Ride Ataxia continues to grow and raise money for the cause.

“I know that I can change the world,” Bryant said. “And I am hopefully showing other people that they can too by spreading this program around and having them be involved.”

DEVON BOHART can be reached at features@theaggie.org.

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