[Congressional Record Volume 147, Number 76 (Tuesday, June 5, 2001)]
[Senate]
[Page S5826]
From the Congressional Record Online through the 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 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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