MDA URGES SUPPORT OF MD-CARE ACT

TUCSON, Ariz., May 1, 2001 - A giant step toward a significant boost in federal funding for muscular dystrophy research was taken today, when a bill known as the Muscular Dystrophy Community Assistance, Research and Education Amendments of 2001 was introduced in the Senate.

The Muscular Dystrophy Association called the legislation an urgently needed measure to help make potential high-tech treatments for muscular dystrophy a reality.

The bill, known as the MD-CARE Act, S.805 [Document can be viewed with Adobe Acrobat.], was introduced by Paul Wellstone, D-Minn. Co-sponsors include Thad Cochran, R-Miss., Susan Collins, R-Maine, and 18 others. A House version is expected to be introduced in the next few weeks.

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MD-CARE would amend the Public Health Service Act to expand existing research programs of the National Institutes of Health to give more attention to the nine forms of muscular dystrophy. It would also establish and fund at least five NIH "centers of excellence" to specialize in different areas of muscular dystrophy research, both basic and clinical.

MDA National Chairman Jerry Lewis said, "The MD-CARE Act has the potential to help hundreds of thousands of children and adults with muscular dystrophy and related diseases, even to save lives. I encourage all Americans to ask their senators to co-sponsor or vote for this bill."

Lewis, who testified before a Senate subcommittee in February about the need for a greater federal expenditure on MD research, said the new bill would "lay the groundwork for Congress to authorize much-needed funding for muscular dystrophy research.

"In the past 50 years, MDA scientists have made tremendous progress in the search for causes of and cures for muscular dystrophy. We hope Congress will help to take us the rest of the way to eliminating the destructive and often fatal consequences of these diseases," Lewis said.

Since Lewis' testimony, the NIH has created a Muscle Biology Study Section as a first step toward more federal involvement in MD research.

Another provision of the bill would promote education and information on MD for the public and for health professionals. The act would direct the Centers for Disease Control to conduct a National Muscular Dystrophy Surveillance Program to gather more accurate data such as numbers of cases of each type of MD.

A significant element of the measure authorizes the funding necessary to carry out its provisions.

MDA is a voluntary health agency working to defeat more than 40 neuromuscular diseases through programs of worldwide research, comprehensive services, and far-reaching professional and public health education. More information about MDA's programs can be found at www.mda.org.