[Congressional Record Volume 150, Number 66 (Wednesday, May 12, 2004)]
[Extensions of Remarks]
[Page E838]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]




              SUPPORTING FRIEDREICH'S ATAXIA AWARENESS DAY

                                 ______
                                 

                         HON. ROBERT E. ANDREWS

                             of new jersey

                    in the house of representatives

                        Wednesday, May 12, 2004

  Mr. ANDREWS. Mr. 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. 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.''
  At the National Institutes of Health 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 15, 2004, 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. Thank you, Mr. Speaker.

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