[Congressional Record (Bound Edition), Volume 147 (2001), Part 7]
[Senate]
[Pages 9864-9865]
[From the U.S. Government Publishing Office, www.gpo.gov]



    MUSCULAR DYSTROPHY COMMUNITY ASSISTANCE, RESEARCH AND EDUCATION 
                           AMENDMENTS OF 2001

  Mr. REID. Mr. President, S. 805, introduced on May 1, 2001 by Senator 
Wellstone, is a vital step toward the day when advanced research will 
find ways to halt, and even cure, the maladies of muscular dystrophy.
  Muscular dystrophy is a genetic disorder--actually, nine separate 
genetic disorders that cause wasting of muscle tissue throughout the 
body. One-quarter of a million Americans of all ages suffer from the 
disease. One form of it, Duchenne's, strikes young boys, and usually 
takes their lives before they reach their twentieth birthday. All forms 
of it are disabling and costly.
  Since 1966, the entertainer Jerry Lewis has conducted a telethon on 
Labor Day, calling the nation's attention to muscular dystrophy, and 
asking help for its victims and their families. The Muscular Dystrophy 
Association, which Jerry Lewis chairs, has raised hundreds of millions 
of dollars for the treatment and relief of this disease. It supports 
over two hundred clinics, and makes wheelchairs and braces available to 
people suffering from muscular dystrophy.
  Part of the money the association raises--about $30 million yearly--
goes to support research projects. But for the breakthroughs to occur 
that will enable scientists not just to treat, but to halt the disease, 
research funding must be substantially increased. This is the purpose 
of S. 805.
  S. 805 calls upon the National Institutes of Health (NIH) and the 
Centers for Disease Control to establish Centers of Excellence, in 
which intensified

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clinical research can be conducted that will speed the discovery of 
cures for the various forms of muscular dystrophy. This legislation 
would provide the Director of the NIH, and the Directors of the several 
institutes within the NIH where research into muscular dystrophy is 
being conducted, with authority and responsibility to concentrate and 
intensify that research effort, with the funds needed to conduct 
clinical trials. In short, it gives NIH the organization and the 
mandate to exploit recent advances in gene therapy. The goal is the 
swiftest possible rescue for children and adults whose lives will 
otherwise be lost or badly damaged by muscular dystrophy.
  The Congress has responded generously and often to the demand for 
research funding aimed at other diseases that shorten or impair the 
lives of Americans. It is time to add muscular dystrophy to the list of 
those diseases. I commend my colleagues for introducing S. 805, and I 
ask that my name be added as a cosponsor of the bill.

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