Friday, November 14, 2008

Ataxian Athlete Initiative

Part of the mission of Ride Ataxia is to “EMPOWER Ataxians by inspiring, motivating and providing opportunities to develop physical and mental strength.” The Ataxian Athlete Initiative strives to accomplish this mission.

Through the 2009 Ataxian Athlete Initiative, Ride Ataxia will fund the purchase of a Terra Trike Cruiser ( be given to an aspiring Ataxian Athlete so that he or she may start a personal Ride Ataxia Adventure.
TerraTrike Cruiser:

To apply for the Ataxian Athlete Initiative individuals will tell their story by filling out a simple application and writing a summary about their experiences with Ataxia. The application is available to Ataxians worldwide. Individuals must have been diagnosed with some form of ataxia to qualify.

The applications will be reviewed by a panel of Disabled Athletes, Ataxians and others in the ataxia community. The recipient will be notified by March 1, 2009. The recipient will be announced and the trike presented at the National Ataxia Foundation Annual Membership Meeting in Seattle, WA on March 20, 2009.

Download the application here.

Saturday, November 01, 2008

RAIII Registration is NOW OPEN!

Registration for Ride Ataxia III is now open! Registration is facilitated by and is easy, quick and secure. Register HERE!

If you would like to find out more before you register please visit "About Ride Ataxia" download and browse the pre-ride information packet or check out the Ride Ataxia III Flyer.

Kyle's Story

“Little did I know this was just the beginning and this disease would lead me to things beyond my imagination.”

For the first half of my life I had no idea that I had Friedreich’s Ataxia. I played sports and carried on just like other kids. When I was thirteen, watching me play baseball, my Dad noticed that something was wrong. In the beginning, my family simply called it clumsiness, but as my coordination and muscle control continued to deteriorate, we started looking for answers. After a year of searching, my family and I were unsettled with the diagnosis of FA not knowing what this disease would bring to our lives.

Many Ataxians are all too familiar with that helpless feeling, the “there’s nothing we can do my life is over” feeling. Two and a half years ago I had that feeling when FA had progressed to the point that it was unsafe for me to continue riding my bike. I was quite frustrated and I figured this is the beginning of the end. Little did I know this was just the beginning and this disease would lead me to things beyond my imagination. I found a trike and started riding. I fell in love with the freedom that came with it. I decided I wanted to do more. I wanted to do something huge that would be life changing for me and that would be an inspiration to all suffering from the effects of Ataxia. So teamed with my family and some close friends we made a 2,500 mile journey from San Diego to Memphis on bike to the National Ataxia Foundation Annual Membership Meeting. We had so much fun on that trip we decided to do it again the following year this time Sacramento to Vegas. Our Vegas trip was amazing because many people came together to participate and fight this disease.

Currently, there is no treatment or cure for Friedreich’s Ataxia. However, I find that strenuous exercise is the best treatment for me. Cycling boosts my physical, mental and emotional strength. Although Ataxia is slowly impairing my physical ability, I have never felt better than I do after a long ride. Cycling is my therapy. When I feel frustrated I can crank out 30 or 40 miles leaving all my frustration on the bike trail. Cycling has boosted my confidence. Cycling gives me a platform to address Ataxia with friends and coworkers. I am proud of my ability instead of ashamed of my disability.

I have found that life is not over and there is much I can do. I am confident that the doctors and researchers are doing all they can to find a treatment or a cure. Until we find a cure, I plan to have fun staying healthy and active as I fight this disease.

About Ride Ataxia

The Ride Ataxia Cycling Team has traveled 3,100 miles in the past two years raising invaluable ataxia awareness and bringing together $350,000 in research funds in collaboration with the National Ataxia Foundation and the Friedreich’s Ataxia Research Alliance.

The mission of Ride Ataxia is to Educate the public about ataxia by drawing attention through acts of physical endurance, Enable the advancement of ataxia research through collaborative financial support and Empower Ataxians by inspiring, motivating and providing opportunities to develop physical and mental strength.

Ride Ataxia I

In January 2007 Kyle and his recumbent tricycle were joined by his dad Mike, his Uncle Steve, fellow Ataxian David (Spinner), his elementary school friend Andy and other dedicated supporters for the 2,500 mile ride from San Diego to Memphis to raise awareness and research funds for Friedreich’s Ataxia. The trip was a HUGE success! Despite knee injuries, harsh weather and other challenges, the team visited FA researchers and patient families along the way, and made it to Memphis on time and in good health. The team raised more than $40,000 and even more exciting was the uniting of the National Ataxia Foundation (NAF) and the Friedreich’s Ataxia Research Alliance (FARA) for the first time ever. Both of these internationally-reaching organizations contributed matching funds creating the $100,000 Kyle Bryant Translational Research Award. By June 2007, the grant was awarded to Dr. Nuri Gueven at Queensland Institute of Medical Research in Australia for research into the catalytic antioxidant CTMIO as a possible treatment for Friedreich's ataxia.

Ride Ataxia II

Ride Ataxia II started on March 15, 2008 in Sacramento, CA and traveled 650 miles in 13 days to the National Ataxia Foundation Annual Membership Meeting in Las Vegas, NV. The ride involved many new teammates including six Ataxians. The team was 50 riders strong for the first day and 21 participants finished as a team at the Flamingo in Las Vegas. Ride Ataxia II raised invaluable awareness and $142,000 for friedreich’s Ataxia research. Once again the National Ataxia Foundation (NAF) and the Friedreich’s Ataxia Research Alliance (FARA) helped fund two Kyle Bryant Translational Research Awards for $125,000 each. One award was to Repligen Corporation, Waltham MA, who in collaboration with an international team of researchers is advancing compounds called HDAC inhibitors that target increased levels of frataxin – the protein that is severely reduced in FA. The second award went to a team of investigators at Ohio State University, Drs. Subha V. Raman and Roula al-Dahhak, who propose a series of sophisticated imaging studies to better understand, prevent and treat heart disease in FA.

Ride Ataxia III

Ride Ataxia III will start in Portland, OR on March 16, 2009. The Ride will travel 200 miles in 4 days to the NAF Annual Membership Meeting in Seattle, WA. The ride will be fully supported with freshly stocked rest stops every 25 miles and Sag vehicles roving the course for safety. The team will have meals together in the morning and the evening and will stay in low cost motels to keep expenses low. The fundraising goal for Ride Ataxia III is $100,000.
Register For Ride Ataxia III