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FARAFARA Cure FA

Congressman Andrews FA Awareness Day Resolution

Friedreich's Ataxia Awareness Day — (Extension of Remarks - May 13, 2008) — Speech of Hon. Robert E. Andrews of New Jersey in the House of Representatives Tuesday, May 13, 2008

Mr. ANDREWS. Madam Speaker, I rise today in support of Friedreich's Ataxia Awareness Day, which is recognized each year on the third Saturday in May. Friedreich's ataxia is a life-shortening neurological disorder that is usually diagnosed in childhood. It causes muscle weakness and loss of coordination in the arms and legs; impairment of vision, hearing and speech; scoliosis, diabetes; and a life-threatening heart condition. Most patients need a wheelchair full-time by their twenties. Life expectancy is reduced to early adulthood. There is currently no effective treatment or cure for Friedreich's ataxia.

 

Although there is no effective treatment or cure available, Friedreich's ataxia patients and families have more and more reason for real hope. In fact, that hope has been translated into increasing confidence that treatment and a cure for Friedreich's ataxia will be achieved. An extraordinary explosion of research insights has followed the identification of the Friedreich's ataxia gene in 1996. Since that discovery, research scientists have learned a great deal about the disorder. We now know what defects in the gene cause the disease, what protein the gene is supposed to produce, what that protein is supposed to accomplish, and why a shortage of the protein results in the cell death that leads to the disease symptoms. Investigators are increasingly optimistic that they are drawing closer to understanding more fully the causes of Friedreich's ataxia and to developing effective treatments. In fact, they have recently declared that, "in Friedreich's ataxia, we have entered the treatment era."

That treatment era is being characterized by the two clinical trials already underway and the additional trial to be initiated over the next 12 months. These investigators and our patient families believe very strongly that these clinical trials will result in the first approved treatments for Friedreich's ataxia.

At the National Institutes of Health across the country and around the world, clinical trials for Friedreich's ataxia are being conducted on drugs that hold real promise. 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.

On the third Saturday of May, events will be held across our country to increase public awareness of Friedreich's ataxia and to raise funds to support the research that promises treatments for this disease. I applaud the Friedreich's Ataxia Research Alliance, FARA, for its contributions to these efforts and ask my colleagues to join me in recognizing May 17, 2008, as Friedreich's Ataxia Awareness Day to show our concern for all those families affected by this disorder and to express our support and encouragement for their efforts to achieve treatments and a cure.

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