Washington, D.C. — Although there is no effective treatment or cure available, Friedreich’s ataxia patients and families have more reason for real hope as they prepare events around the country on "Friedriech’s Ataxia Awareness Day," May 15th. The day is recognized in a Congressional proclamation and various events around the country. "An extraordinary explosion of research insights has followed the identification of the Friedreich’s ataxia gene in 1996," said U.S. Rep Robert E. Andrews of New Jersey in introducing the Congressional proclamation. "Growing cooperation among organizations supporting the research and the multidisciplinary efforts of thousands of scientists and health care professionals provide powerful evidence of the increasing hope and determination to conquer Friedreich’s ataxia. There is also a growing conviction that treatments can and will be developed for this disease and that the resulting insights will be broadly applicable across a wide range of neurological disorders such as Parkinson’s, Huntington’s and Alzheimer’s."
In Kentucky, State Representative Paul Marcotte introduced a similar resolution "in honor of my 8-yearold grandson" who has Friedreich’s ataxia. State Senator Dick Roeding, President Pro-Tem of the Kentucky Senate introduced a companion resolution.
Friedreich's ataxia is a hereditary disease that often first becomes noticeable as a balance and coordination problem when children are in elementary school. Further loss of strength and coordination in all four extremities usually forces them into wheelchairs by their teens, while the disorder impairs vision, hearing and speech as it progresses. It is frequently associated with severe heart disease, scoliosis, and diabetes. In the later stages of the disease, patients are usually completely incapacitated, often dying of cardiac failure. Average life expectancy extends only to early adulthood. However, some people with less severe symptoms of Friedreich's ataxia live much longer. Friedreich's ataxia, although rare, is the most prevalent inherited ataxia, affecting about 1 in every 50,000 people in the United States.
The Friedreich’s Ataxia Research Alliance (FARA) is a 501(c)(3), non-profit, charitable organization dedicated to accelerating research leading to treatments and cures for Friedreich's Ataxia (FRDA) and the related sporadic ataxias. http://www.FAResearchAlliance.org
President, Friedreich’s Ataxia Research Alliance