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 for "Friedreich's Ataxia Awareness Day" on May 21st. The day is recognized in a Congressional proclamation and through various events around the country. Friedreich's Ataxia is a fatal, hereditary, degenerative, neurological disease that typically first becomes noticeable when children are in elementary school.
"An extraordinary explosion of research insights has followed the identification of the Friedreich's Ataxia gene in 1996," said U.S. Rep John A. Boehner of Ohio in introducing the Congressional proclamation. We see "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 9-year-old grandson" who has Friedreich's Ataxia. State Senator Dick Roeding, President Pro-Tem of the Kentucky Senate introduced a companion resolution. California's state legislature has also recognized the third Saturday in May as National Friedreich's Ataxia Awareness Day.
As we enter the tenth year following identification of the Freidreich's ataxia gene, excitement is growing over the scientific advances being made, at an ever increasing pace, toward treatments and a cure. The scientists have now proclaimed that, "we are entering the treatment era in this disease." They are increasingly certain they will conquer Friedreich's ataxia, and are convinced it is no longer a question of "if" but, rather of "when." They tell us, too, that what these families are doing on their National Awareness Day to support the research will continue to take years off the road to "when."
The disease 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. Additional symptoms frequently include 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, although 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 one in every 50,000 people in the United States.
The Friedreich's Ataxia Research Alliance (FARA) is a 501(c)(3), non profit, tax-exempt organization dedicated to the pursuit of educational, scientific and research activities leading to treatments for Friedreich's ataxia. FARA also serves as a patient advocacy group to educate the public, elected representatives, and other government officials regarding Friedreich's ataxia and the importance of funding biomedical research. FARA works closely with the National Institutes of Health and other organizations in the United States and elsewhere that are supportive of Friedreich's ataxia research. http://www.FAResearchAlliance.org
President, Friedreich’s Ataxia Research Alliance