[Congressional Record (Bound Edition), Volume 147 (2001), Part 7]
[Senate]
[Page 9183]
[From the U.S. Government Publishing Office, www.gpo.gov]



                           MUSCULAR DYSTROPHY

  Mr. HOLLINGS. Mr. President, S. 805, introduced on May 1, is a vital 
step toward the day when advanced research will find ways to halt, and 
even to 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. A 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.
  Many millions of Americans know about muscular dystrophy and 
contribute to its relief because 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 if the breakthroughs are 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.
  It calls upon 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.
  It provides the Director of the NIH, and the Directors of the several 
institutes within 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.
  I commend my colleagues for introducing S. 805, and I ask that my 
name be added as a co-sponsor of the bill at its next printing.

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