Kyle Bryant is in day 9 of a 2,800-mile bike ride to raise awareness and research funds to help find a cure for the rare neuromuscular disorder, Friedreich's ataxia (FA), with which he and thousands of other Americans are affected.
Bryant launched his courageous trip from The Scripps Research Institute in La Jolla, California, on January 22 — his ears ringing with applause and shouts of encouragement from appreciative FA patients and the Scripps scientists making encouraging progress toward treatments and a cure for his disease.
Kyle plans to spend tomorrow, day 10 of his ride, in Phoenix, where a number of families are affected with Friedreich's ataxia and with other forms of ataxia as well. Bryant looks to finish his ride in Memphis, Tennessee, in time to help open the annual meeting of the National Ataxia Foundation on March 22nd.
"I'm one of the lucky ones that can still get around, but there are a lot of people that are affected by this disease," says Bryant. "I'm trying to do something extreme to raise awareness, just because no one knows about it."
Bryant, 25, left La Jolla with a group of friends and family, and is logging about 60 miles a day. He is keeping a blog describing his adventures along the way: http://rideataxia.blogspot.com.
The photo here illustrates what Bryant wants to accomplish. On the left are Dr. Joel Gottesfeld and his research associate Elisabetta Soragni. Their work together at Scripps is among the world's most promising of effective treatment for Friedreich's ataxia (http://www.scripps.edu/newsandviews/e_20070129/ - once on the page, click "Cycling for a Cure"). Bryant (in cycling jersey) is flanked by Earl McLaughlin (center) and Ron Bartek. Earl leads the San Diego Support Group of the National Ataxia Foundation (NAF) and has Friedreich's ataxia. Ron is co-founder and president of the Friedreich's Ataxia Research Alliance (FARA) and has a son with Friedreich's ataxia.
FARA and NAF provide financial support for the exciting work being done by Gottesfeld and Soragni and their colleagues at Scripps, and Bryant's momentous ride is inspiring the two organizations to redouble their collaboration so as to accomplish all the faster the goal they share with Bryant - treating and curing Friedreich's ataxia.
Friedreich's ataxia is a life-shortening, debilitating and rare genetic neurodegenerative disorder. Onset of symptoms usually occurs between the ages of 5 and 15. Symptoms include muscle weakness and loss of coordination in the arms and legs; impairment of vision, hearing and speech; aggressive scoliosis (curvature of the spine); diabetes, and a serious heart condition. Most patients need a wheelchair full-time by their late teens and die as young adults. There is currently no treatment or cure.
There have been a number of promising developments in Friedreich's ataxia research in recent years. Six Friedreich's ataxia clinical trials are planned in the U.S., Europe and Australia/New Zealand over the next year or so.
The Scripps Research Institute team has developed Histone Deacetylase (HDAC) inhibitors that, in test cells, reactivate the frataxin gene that appears to be "silenced" in Friedreich's ataxia. Early tests in cell cultures from patients have boosted the gene's product - frataxin protein - to therapeutic levels. The compounds are currently being tested in animal models.
"And so we carry on, a few more pedal strokes closer to Memphis and a cure for Friedreich's Ataxia..." Kyle, Day 3, outside El Centro, CA.
NAF is a membership supported, nonprofit organization established in 1957 to help persons with ataxia and their families. The Foundation's primary purpose is to support promising ataxia research and to provide vital programs and services for ataxia families.
The Friedreich's Ataxia Research Alliance (FARA) is a 501(c)(3), non-profit, charitable organization dedicated to accelerating research leading to treatments that slow, stop and reverse the damage done by Friedreich's ataxia.
Executive Director, National Ataxia Foundation
President, Friedreich’s Ataxia Research Alliance