[Congressional Record Volume 151, Number 56 (Tuesday, May 3, 2005)]
[Extensions of Remarks]
[Page E852]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]




         IN SUPPORT OF A BILL FOR THE FURTHER STUDY OF DYSTONIA

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                          HON. DANNY K. DAVIS

                              of illinois

                    in the house of representatives

                          Tuesday, May 3, 2005

  Mr. DAVIS of Illinois. Mr. Speaker, I rise today in support of a bill 
I introduced expressing the need for further study of the neurological 
disorder dystonia. Dystonia is characterized by powerful and painful 
muscle spasms that cause the body to pull into distorted postures. It 
is the third most common movement disorder after Parkinson's disease 
and Tremor. Dystonia affects more people than better known and more 
thoroughly researched diseases such as Huntington's disease, muscular 
dystrophy and Lou Gehrig's disease. Three hundred thousand Americans 
suffer from dystonia, and it affects all ages, genders and ethnic 
backgrounds.
  Currently there is no cure for dystonia, which means only the 
symptoms can be treated. Led by the National Institutes of Health which 
recently announced a program entitled ``Studies into the Causes and 
Mechanisms of Dystonia'', I ask that Congress act to support increased 
funding and research for this debilitating disease.
  To personalize the importance of research pertaining to dystonia, let 
me tell a short story about Art Kessler, a man from the 7th District of 
Illinois, who was diagnosed at age 12 with early-onset dystonia. He and 
his wife, Wendy, decided to remain childless to prevent another life 
from being burdened with dystonia. However, due to recent technological 
advances and a ground breaking procedure called preimplantation genetic 
diagnosis (PGD), Mr. Kessler and his wife are the proud parents of a 
dystonia-free child. Benjamin is the first child ever to be born using 
PGD.
  I urge my colleagues to support this resolution to bring increased 
public awareness about dystonia and to encourage future research into 
the causes and possible cures. The efforts put forth by agencies such 
as the National Institute of Neurological Disorders and Stroke and the 
National Institute on Deafness and Other Communication Disorders have 
been very valuable, but more needs to be done. Let us strive to make 
success stories like that of Mr. Kessler everyday occurrences. This is 
the path we hope to take by supporting and eventually passing this 
resolution.

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