MD-CARE ACT LEADS TO ESTABLISHMENT OF MUSCULAR DYSTROPHY RESEARCH CENTERS
TUCSON, Ariz., Sept. 30, 2002 — Following guidelines set down by the MD-CARE Act, the federal government has announced plans to increase its funding for muscular dystrophy research by nearly $15 million over the next five years.
Signed into law by President Bush in December, the Muscular Dystrophy Community Assistance, Research and Education Amendments of 2001 (MD-CARE Act) directs the National Institutes of Health (NIH) to place more emphasis on seeking treatments and cures for muscular dystrophy. This week, NIH officials announced their intent to establish two or three Muscular Dystrophy Cooperative Research Centers, each with an allowance of up to $1 million per year until 2007.
"We're very pleased with this response to our efforts to garner more federal support for muscular dystrophy research," Robert Ross, president & CEO of the Muscular Dystrophy Association, said.
MDA staff worked with congressional committees to help draft the MD-CARE Act last year. MDA National Chairman Jerry Lewis, MDA Board member Ed McMahon and other MDA representatives appeared before Congress to rally for its passage.
The Muscular Dystrophy Cooperative Research Centers are NIH's answer to a key part of the MD-CARE Act, which calls for the creation of several "centers of excellence" dedicated to muscular dystrophy research. NIH is committed to spending $4.5 million next year to establish the centers, which are likely to be formed through collaborations among existing universities and research institutes.
It's hoped that the centers will accelerate the development of treatments for the nine forms of muscular dystrophy, which together affect some 250,000 Americans, Ross said. In keeping with that goal, NIH will require each center to conduct a minimum of three research projects, with at least one aimed at improving diagnosis, treatment or other health-related services for people with muscular dystrophy.
MDA-funded scientists have already made significant progress toward treating these diseases, especially in the areas of gene therapy and stem cell therapy. MDA supported the MD-CARE Act because the expense of testing these high-tech therapies in clinical trials is likely to require federal support.
In addition to the creation of centers of excellence, the MD-CARE Act contains provisions to establish a tissue bank for storing and analyzing samples of muscle and genetic material from muscular dystrophy patients, and a surveillance system to track the incidence of muscular dystrophy.
"We hope to see all parts of the MD-CARE Act fulfilled in the near future, but the establishment of the Muscular Dystrophy Cooperative Research Centers is a terrific start. We'll help in any way we can to ensure their success," Ross said.
MDA is the nonprofit health agency dedicated to curing muscular dystrophy, ALS and related diseases by funding worldwide research. The Association also provides comprehensive health care and support services, advocacy and education. The Association's programs are funded almost entirely by individual private contributors.
More information about MDA can be found at www.mda.org or by calling (800) 572-1717.
