The Disease
Friedreich's ataxia is a rare, genetic, neurodegenerative, multi-system, life-shortening disorder. About one in 50,000 people in the United States have Friedreich's ataxia. Onset of symptoms is usually between the ages of 5 and 15, sometimes even earlier and sometimes significantly later. Symptoms include muscle weakness and loss of coordination (ataxia) in the arms and legs, vision impairment, hearing loss and slurred speech, aggressive scoliosis (curvature of the spine), diabetes and a serious heart condition (enlarged heart-hypertrophic cardiomyopathy). The mental capabilities of people coping with Friedreich's ataxia, however, remain completely intact. For most, progressive loss of muscle strength and control leads to motor incapacitation and the full-time use of a wheelchair by the late teens or early twenties. There are currently no treatments or cures.
The Friedreich's Ataxia Research Alliance (FARA) is a national, public, 501(c)(3), non-profit, tax-exempt organization dedicated to the pursuit of scientific research leading to treatments and a cure for Friedreich's ataxia. FARA's mission is to slow, stop, and reverse the damage caused by this disorder. In November 2006 FARA held the 3rd International Friedreich's Ataxia Conference where 150 of our scientists from around the world gathered at the National Institutes of Health to share exciting insights into current research and to make plans for upcoming clinical trials with promising compounds. Please visit our website to learn more.
Please help us reach our goal of treating or curing this disease.