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Public Statements

Paul D. Wellstone Muscular Dystrophy Community Assistance, Research, and Education Amendments of 2008

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Location: Washington, DC


PAUL D. WELLSTONE MUSCULAR DYSTROPHY COMMUNITY ASSISTANCE, RESEARCH, AND EDUCATION AMENDMENTS OF 2008 -- (House of Representatives - September 23, 2008)

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Mr. PALLONE. Mr. Speaker, I yield myself such time as I may consume.

Mr. Speaker, I rise in support of H.R. 5265, the Paul Wellstone Muscular Dystrophy Community Assistance, Research, and Education Amendments of 2008, a bill to reauthorize programs at the National Institutes of Health and the Centers for Disease Control and Prevention for research on various forms of muscular dystrophy.

Duchenne-Becker muscular dystrophy, DBMD, is a combined spectrum of a genetic disorder. DBMD is usually diagnosed when the child is 3 to 6 years of age. Early signs include delays in walking and frequent falling. As the child grows older, muscle deterioration continues to progress until, finally, the disease reaches a fatal conclusion in the teen years.

Enacting H.R. 5265 would make a number of improvements to current programs at the NIH and CDC. It would allow the interagency coordinating committee for muscular dystrophy to give special consideration to enhancing the clinical research infrastructure required to test emerging therapies for the various forms of muscular dystrophy, require the director of the CDC to report on muscular dystrophy surveillance, tracking, and research network data collection and provide for respective health outcome data on the health and survival of people with muscular dystrophy and require the director of the Agency for Health Care Research and Quality to evaluate the available scientific evidence to develop and issue an initial set of care considerations for DBMD and provide ongoing review and updates. All of the above coordinated research and tracking efforts will continue to lead us down a path towards one day finding a cure for this tragic condition.

I want to thank my colleague on the Commerce Committee, Congressman Engel of New York, for his leadership on this legislation. He has been working on this bill for a long time, and I appreciate his efforts to craft a strong bipartisan product.

I fully support H.R. 5265 and urge my colleagues to join me in its adoption.

Mr. Speaker, I reserve the balance of my time.

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