The National Ataxia Foundation (NAF) and the Friedreich's Ataxia Research Alliance (FARA) announced today that, this year, they are co-funding two $125,000 Kyle Bryant Awards that are going to promising translational research in Friedreich’s Ataxia (FA). One award is being made 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 goes 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.
Repligen’s research proposes to develop methods to use with the FA mouse models in order to select which HDAC inhibitor will be best to test in FA patients and what doses of that HDAC inhibitor will be most likely to maximize frataxin protein levels while minimizing toxicity. Drs. Subha V. Raman and Roula al-Dahhak, recognizing that heart disease in FA is poorly understood, have focused their research project on testing new ideas regarding how heart disease develops in FA, earlier detection of the heart disease, and development of new prevention and treatment strategies that would reduce heart-related disability and death.
These two research projects were selected from eight excellent applications that were peer-reviewed and then ranked by FARA and NAF scientific advisors. The Kyle Bryant Translational Research Award was established in honor of Kyle Bryant, the courageous young man who has Friedreich's ataxia and formed Ride Ataxia. Ride Ataxia has helped increase awareness regarding FA and raise invaluable research funds for FA research. The Ride allows motivated individuals to experience and advance the fight against this debilitating disease. In 2008, Ride Ataxia II began in Sacramento, CA and ended in Las Vegas, NV at the 51st NAF annual membership meeting. Bryant and Ride Ataxia II teams raised over $140,000 to support the award. NAF and FARA announced at the end of the ride that the two organizations would add sufficient funds to bring the total of the 2008 Kyle Bryant Translational Research Award to $250,000.
NAF Executive Director Michael Parent commented, "The National Ataxia Foundation is truly grateful to Kyle Bryant and the other riders and supporters of Ride Ataxia II in making it possible to help fund two $125,000 quality research studies. Their efforts give hope for today and a promise for a brighter future for those affected by ataxia and their families." FARA President Ron Bartek added, "Kyle’s courage, commitment and dedication, reinforced by a growing number of his family members, friends, supporters and others with FA, have again inspired and enabled FARA and NAF to collaborate in co-funding exciting new FA research. With all of us working together like this, we will develop treatments and a cure. This Kyle Bryant-FARA-NAF collaboration is accelerating that accomplishment."
Ride Ataxia II, launched in Sacramento, CA on March 15, 2008 with 50 riders, and logged about 60 miles a day, arriving in Las Vegas on March 28, 2008. Bryant kept a blog describing the adventures along the way: http://rideataxia.blogspot.com
"There is an optimism in our community of Ataxians. Many people think that we can actually beat this thing. I am confident that our brilliant doctors and researchers are doing all they can to find a treatment or a cure. Until we find a cure, Ride Ataxia will continue to promote an active and healthy lifestyle for all Ataxians." said Bryant.
Friedreich's ataxia is a rare, life-shortening, debilitating, 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.
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. http://www.ataxia.org
The Friedreich's Ataxia Research Alliance (FARA) is a 501(c)(3), non-profit, charitable organization dedicated to accelerating research leading to treatments and a cure for Friedreich's ataxia. http://www.curefa.org
President, Friedreich's Ataxia Research Alliance
Executive Director, National Ataxia Foundation
Founder, Ride Ataxia