[Congressional Record Volume 148, Number 61 (Tuesday, May 14, 2002)]
[Extensions of Remarks]
[Pages E800-E801]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]




            RECOGNITION OF FRIEDREICH'S ATAXIA AWARENESS DAY

                                 ______
                                 

                         HON. ROBERT E. ANDREWS

                             of new jersey

                    in the house of representatives

                         Tuesday, May 14, 2002

  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 treatment or cure available, Friedreich's ataxia 
patients and families have more and more reason for real hope. An 
extraordinary explosion of research findings 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.
  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. Intensifying cooperation among organizations supporting 
the research and the multidisciplinary efforts of thousands of 
scientists and health care professionals provide powerful evidence of 
the growing hope and determination to conquer Friedreich's ataxia. 
There is 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.
  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 18, 2002, as Friedreich's Ataxia Awareness Day to show 
our concern for all those families affected by this disorder and to 
express our

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support and encouragement for their efforts to achieve treatments and a 
cure.

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