Paralysis Resource Guide - (Page 18) CONDITIONS There is currently a clinical trial in the United States and in Europe sponsored by Swiss drug company Santhera to evaluate Idebenone, a form of coenzyme Q10, on heart function in people with Friedreich’s Ataxia. Early results showed improvement of neurological parameters and activities of daily living scores. Sources National Institute of Neurological Disorders and Stroke, National Organization for Rare Disorders, Friedreich’s Ataxia Research Alliance, Muscular Dystrophy Association FRIEDREICH’S ATAXIA RESOURCES Friedreich’s Ataxia Research Alliance (FARA) offers information on Friedreich’s ataxia and the related ataxias, including current research, ongoing studies, as well as information for researchers, patients, families and caregivers. FARA also offers support and information for the newly diagnosed. FARA, P.O. Box 7537, Springfield, VA 22151; telephone 703–413–4468; or visit the Internet site http:/ / www.curefa.o rg National Ataxia Foundation (NAF) supports research into hereditary ataxia, with numerous affiliated chapters and support groups in the United States and Canada. The foundation offers information, education and referral. NAF, 2600 Fernbrook Lane Suite 119, Minneapolis, MN 55447; telephone 763–553–0020; or visit the Internet site http://www.ataxia.org National Organization for Rare Disorders (NORD) is committed to the identification and treatment of rare disorders through education, advocacy, research and service. There are more than 6,000 rare disorders, including Friedreich’s ataxia, that together affect about 25 million Americans. For more on specific disorders visit the Internet site http://www.rarediseases.org Muscular Dystrophy Association (MDA) offers news and information about neuromuscular diseases, including ataxias. MDA National Headquarters, 3300 E. Sunrise Drive, Tucson, AZ 85718; toll-free 1-800-344-4863; or visit the Internet site http://www.mdausa.org 18 http://www.curefa.org http://www.ataxia.org http://www.rarediseases.org http://www.mdausa.org
For optimal viewing of this digital publication, please enable JavaScript and then refresh the page. If you would like to try to load the digital publication without using Flash Player detection, please click here.