[Congressional Record (Bound Edition), Volume 151 (2005), Part 8]
[Extensions of Remarks]
[Page 10516]
[From the U.S. Government Publishing Office, www.gpo.gov]




            RECOGNITION OF FRIEDREICH'S ATAXIA AWARENESS DAY

                                 ______
                                 

                          HON. JOHN A. BOEHNER

                                of ohio

                    in the house of representatives

                        Wednesday, May 18, 2005

  Mr. BOEHNER. 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 
usually diagnosed in childhood, causing 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. Sadly, I have a 
young constituent who suffers from this rare disease, Evan Luebbe. Evan 
and his family are working to bring awareness to this disease in my 
district. I am proud of the strength and courage he exemplifies as he 
battles this disease.
  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. The growing cooperation among organizations supporting 
the research, and the multidisciplinary efforts of thousands of 
scientists and health care professionals, provide powerful evidence of 
the determination to conquer Friedreich's ataxia.
  On the third Saturday of May, events will be held across our country, 
including one in West Chester, Ohio, 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 21, 2005, 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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