[Congressional Record (Bound Edition), Volume 154 (2008), Part 6]
[Extensions of Remarks]
[Pages 8949-8950]
[From the U.S. Government Publishing Office, www.gpo.gov]




                   FRIEDREICH'S ATAXIA AWARENESS DAY

                                 ______
                                 

                         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 four additional trials 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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