Ed McMahon Asks Congressional Committee
to Speed Muscular Dystrophy Research

TUCSON, Ariz., June 27, 2001 - Television personality Ed McMahon appeared before a congressional subcommittee today to urge increased federal funding of muscular dystrophy research.

The popular entertainer represented the Muscular Dystrophy Association during testimony before the Subcommittee on Health of the House Energy and Commerce Committee. He pleaded for support of MDA's request that the National Institutes of Health allocate an additional $100 million annually to help take muscular dystrophy research to the next level - costly trials of high-tech potential treatments.

"Over the years, I've had the opportunity to meet and get to know many wonderful children and adults with MD. Unfortunately, many of them are not with us today. And that's why I am here today," McMahon told the committee. McMahon is a longtime anchor of the MDA Jerry Lewis Labor Day Telethon and an MDA national vice president.

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McMahon's testimony echoes the Feb. 27 appearance by MDA National Chairman Jerry Lewis before a Senate subcommittee asking the federal government to become more aggressively involved in muscular dystrophy research. The MDA advocacy effort is the first time in the Association's 50-year history that it's urged federal funding to help in the search for cures for muscular dystrophy. MDA proposes that NIH award more funding directly to researchers, not to the Association.

McMahon told committee members that, although MDA-funded researchers in the past 25 years have discovered the genetic causes of most forms of muscular dystrophy, more needs to be done.

"Until recently, MDA managed to fund all the research into muscular dystrophy that was scientifically justified," he said. But the next step in research is clinical trials involving such cutting-edge techniques as gene therapy and stem cell therapy.

"The cost of a clinical trial to test one genetic fix for one particular disease-causing flaw is $20 million," McMahon said.

The nine muscular dystrophies, many of which can result from any of several different genetic defects, could require dozens of separate trials. Although such trials may be scientifically feasible soon, the costs would be beyond MDA's capacity, McMahon said.

Also present at the hearing was MDA Director of Research Development Sharon Hesterlee.

MD-CARE Act, S.805 [Document can be viewed with Adobe Acrobat.], introduced in the Senate May 1, represents a first step toward enhancing NIH focus on muscular dystrophy research. MDA expects a similar bill [H.R. 717, Document can be viewed with Adobe Acrobat.] to gain broad support in the House.

Muscular dystrophy is the name given to a group of disorders caused by genetic defects and characterized by weakening and eventual wasting of voluntary muscles. The muscular dystrophies can also weaken the muscles of the heart and those required for breathing.

MDA is a voluntary health agency working to defeat neuromuscular diseases through programs of worldwide research, comprehensive services, and far-reaching professional and public health education.

More information about the hearing, including testimony and biographical information about McMahon, can be found at the Association's Web site, www.mda.org.