UC Davis alumnus Kyle Bryant returns to the area this Friday and Saturday (June 9-10) for a movie screening and bike ride to raise awareness of and research funding for Friedreich’s ataxia, the rare disease with which he was diagnosed at age 17. 

The disorder is characterized by progressive neurodegeneration in the spine, as well as muscle weakness, heart disease and diabetes. See related article on new research findings from UC Davis.

Bryant, who graduated with a degree in engineering in 2005, is the national spokesman for the Friedreich’s Ataxia Research Alliance, or FARA, a national, nonprofit organization.

Like most scientific endeavors, Friedreich’s ataxia research proceeds incrementally — every advance adding one new piece to the disease puzzle. But for Friedreich’s patients and their families, each discovery is huge.

“Friedreich’s ataxia affects one in 50,000 people, so when you are first diagnosed, you feel very alone — like you and your family are the only ones who have ever heard of the disease,” Bryant said. “When you learn that other people have not only heard of it but know it well and are making real progress toward a treatment, it brings a feeling of hope and empowerment that penetrates all aspects of your life.” 

In 2007, joined by a core team of friends and family members, Bryant pedaled 2,400 miles over 59 days on a recumbent tricycle from San Diego to Memphis, Tennessee, to an annual meeting for people living with ataxia. The ride was the catalyst for what would grow into a network of annual fundraising events throughout the United States.

A total of more than 2,500 people participated in rideATAXIA events across the country last year, raising more than $1 million in support of FARA’s mission to treat and cure Friedreich’s ataxia.