[Congressional Record (Bound Edition), Volume 146 (2000), Part 15]
[Extensions of Remarks]
[Page 21836]
[From the U.S. Government Publishing Office, www.gpo.gov]



                          ATAXIA AWARENESS DAY

                                 ______
                                 

                        HON. JOHN J. DUNCAN, JR.

                              of tennessee

                    in the house of representatives

                       Thursday, October 5, 2000

  Mr. DUNCAN. Mr. Speaker, September 25, 2000, marked International 
Ataxia Awareness Day. Ataxia disorders comprise a family of 
progressive, degenerative, neurological illnesses which affect more 
than 100,000 American families, including many in my District. Ataxia 
usually initially affects coordination, speech, and balance, but 
various forms often progress to impact the heart, sight, and hearing.
  Unfortunately, there are no effective treatments for this often fatal 
disease. Worse, our very limited understanding of most forms of the 
disorder has not even produced any effective treatments. Hopefully we 
can increase awareness of this serious public health threat and spur 
the type of progress which will bring hope to the thousands of American 
families dealing with Ataxia.
  The biomedical revolution which has taken root over the last couple 
of decades offers great promise. That is why I have been a proud 
supporter of the research efforts at the National Institutes of Health 
(NIH) and the National Institute on Neurological Disorders and Stroke 
(NINDS), the component of NIH charged with the study of Ataxia.
  For example, NINDS-supported research has recently generated 
considerable new insights into more than 100 related gene defects which 
cause nervous system disorders. This work is particularly important to 
those suffering from the many forms of Ataxia which still cannot be 
specifically diagnosed. As we identify the genes responsible we can 
more quickly identify specific forms, and perhaps more importantly, 
begin developing treatment models.
  Additionally, we need to continue to create incentives for additional 
private research aimed at the so-called orphan diseases. These 
relatively rare conditions do not receive the resources and attention 
that are often associated with more common public health problems like 
cancer and heart disease. I believe these special incentives for those 
developing orphan drugs have proven to be an unqualified success 
resulting in more new research on Ataxia, multiple sclerosis, ALS and 
other neurological disorders.
  Even with all these efforts under way, it will still take time to 
even fully understand the questions we need to be asking about Ataxia. 
That is why it is so important to inform the public about this work and 
encourage the medical and emotional support those affected need. 
International Ataxia Awareness Day should be a substantial step in this 
direction,


and I anticipate it will be an annual event. At the same time, we can 
hope that current research foreshadows a day when it will no longer be 
necessary to raise awareness of Ataxia.

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