November 18, 2002

ON THE MD-CARE ACT'S NEXT STEP

With so much at stake, MDA needs as much help as possible in its fight against neuromuscular diseases. That’s why we lobbied Congress last year for the passage of the MD-CARE Act, and why we were overjoyed to see its first provision carried out this fall.

Drafted by MDA, other voluntary health organizations and members of Congress, the Muscular Dystrophy Community Assistance and Education Amendments of 2001 (MD-CARE Act) sets guidelines for the federal government to enhance its funding of muscular dystrophy research.

The act became law last year, in large part thanks to impassioned congressional pleas from MDA’s National Chairman Jerry Lewis, Board member Ed McMahon, MDA Medical Advisory Committee Chairman Leon Charash and many of the families we serve.

Jerry Lewis with Benjamin Cumbo at a Senate subcommittee hearing. On the MD-CARE Act in 2001.

In September, the National Institutes of Health (NIH) announced it plans to spend up to $15 million to fulfill one of the MD-CARE Act’s most important provisions: the establishment of several “centers of excellence” for muscular dystrophy research. Next year, the NIH will provide five-year grants to two or three Muscular Dystrophy Cooperative Research Centers, each with an annual budget of up to $1 million.

The centers will be formed at universities and existing research institutes, and are likely to be headed by scientists who’ve already made significant advances in muscular dystrophy research with support from MDA — talented people you probably know from our reporting on MDA research. Each center will have a focus on improving diagnosis, treatments and health-related services for people with any of the forms of muscular dystrophy.

We expect the centers to greatly accelerate progress toward gene therapy, stem cell therapy and other high-tech treatments for the muscular dystrophies, as they supplement our own ongoing research.

This is a wonderful, but bittersweet victory for MDA, because just a month

Leon Charash (left), MDA Board member and chairman of MDA's Medical Advisory Committee, described the Association's research accomplishments to the Senate subcommittee. Also testifying were MDA grantee H. Lee Sweeney of the University of Pennsylvania and Audrey S. Penn (right) of the National Institute of Neurological Disorders and Stroke. Penn is a member of MDA's Medical Advisory Committee.

after the NIH’s announcement, we lost a true friend, Senator Paul Wellstone. Wellstone sponsored the MD-CARE Act and introduced it in Congress in May 2001. On Oct. 25, the senator, his wife and daughter, and several members of his staff were killed in a plane crash. We’re deeply saddened by their passing, and eternally grateful for Senator Wellstone’s commitment to our cause.

We’ll do everything in our power to see that the efforts of Wellstone, our staff and the many others who stood behind the MD-CARE Act come to fruition. We’ll work closely with NIH officials to ensure the success of the Muscular Dystrophy Cooperative Research Centers and the full implementation of the MD-CARE Act.

We won’t give up until we’ve won the fight.

With every best wish...

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