Many UC Davis students bike miles every week to get to class, work or wherever they are going. This May, hundreds will ride to change the lives of thousands of Americans with a rare disease known as Freidreich’s Ataxia (FA).
Kyle Bryant, a 2005 UC Davis civil engineering graduate and a FA patient, founded the Ride Ataxia program four years ago in cooperation with the Freidreich’s Ataxia Research Alliance (FARA). Freidreich’s Ataxia is a progressive, degenerative neuromuscular disorder in which the patient gradually loses muscle coordination throughout their entire body, from toes to fingertips, Bryant said.
He was diagnosed with FA at age 17, over a decade ago.
“My family and I soon found out that my abilities would deteriorate over time, I would be in a wheelchair soon and I would likely die a premature death due to heart failure. That was a heavy load,” Bryant said in an e-mail interview.
Bryant has been riding bikes to raise awareness and funds for FA research since 2007, when he and his family rode 2,500 miles from San Diego to Memphis.
Since then, Bryant founded the Ride Ataxia program, in which hundreds of cyclists come out to bike 15- to 65-mile courses to support FA research. Only in its fourth year, Ride Ataxia has thus far raised $960,000 in research grants for the disease.
One of these grants was awarded to UC Davis’ Dr. Gino Cortopassi for his work in advancing research on FA. Cortopassi stated that there have been two main focal points in FA research. First, scientists attempted to comprehend the mechanism of the disease. They understood that the disease is genetic and that it results from a mutation that prevents the body from being able to produce sufficient amounts of frataxin, a protein vital to cellular function. But exactly how the disease is inherited and how a frataxin deficiency kills neurons throughout the body is still uncertain.
The second focus for the research started on drugs that prevent the cell dying from this deficiency. Cortopassi and other scientists have uncovered nearly 40 compounds that inhibit cell death on account of frataxin deficiency.
“We’ve actually just finished clinical trials on [one such compound], so this is a very exciting time for us,” said Jen Farmer, executive director of FARA.
Several other compounds are being prepared for clinical trials as well. At the moment, Farmer said the only thing that is slowing down the process of getting a widely available treatment is the amount of federal regulation that they have to go through.
In the meantime, efforts such as Ride Ataxia, which brings public attention to FA and raises funds for further research, will continue. This year’s Ride Ataxia NorCal will start from the Davis Veterans Memorial Center on 14th Street and head out toward Woodland on May 14.
Both adults and children can register, $35 and $25, respectively, before April 14 and $40 and $30 after that date. There will be several different courses to bike: a 15-, 30-, 50-mile and a metric century (100 kilometers or about 62 miles) route with the option to enter either as an individual or as a team.
This is not the only Ride Ataxia event this year. Three others will be hosted in Dallas, Philadelphia and Orlando. The organization hopes to raise half a million dollars between all four rides, almost $125,000 per event.
In the upcoming ride in Davis, top fundraisers will be invited to a special appreciation event the night before at the Bicycling Hall of Fame at Third and B Street, featuring hors d’oeuvres and speakers, including Bryant himself. Fundraisers do not have to enter the ride, but both fundraising and cycling are open to anyone.
“I just want to see as many people as possible out on the road,” Bryant said.
KEVIN KANKEL can be reached at email@example.com.