Research Administration Winter 2009

Article Highlights:

by Quest Staff on January 1, 2009 - 6:54pm

QUEST Vol. 16, No. 1

Updated MD-CARE Act is now law

The Paul D. Wellstone Muscular Dystrophy Community Assistance, Research and Education (MD-CARE) Amendments of 2008 received final Congressional approval on Sept. 27 and were signed into law by President Bush Oct. 8.

The legislation reauthorizes and updates the MD-CARE Act of 2001 and will escalate research and development of treatments for several forms of muscular dystrophy.

The original Act required that the National Institutes of Health (NIH) designate muscular dystrophy research “centers of excellence” to work independently and collaboratively. MDA aided creation of these centers by contributing $1.5 million to each of the first three.

The original Act also mandated creation of what is now the Muscular Dystrophy Coordinating Committee to expand research efforts; established an epidemiological data collection system under the Centers for Disease Control and Prevention; and piloted a national care considerations project for Duchenne muscular dystrophy and Becker muscular dystrophy.

The amendments include several new provisions, such as expanding the epidemiological data collection to include health outcomes and reflect patients’ changing conditions over time; the development and broad distribution of care considerations in muscular dystrophy; and the “fast-tracking” of research findings into therapies.

Louis Kunkel
Louis Kunkel, who chairs MDA’s Scientific Advisory Committee, has been named co-director of the new Muscular Dystrophy Cooperative Research Center at Boston Biomedical Research Institute.

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Boston Biomedical becomes Wellstone MD Center

Boston Biomedical Research Institute (BBRI) in Watertown, Mass., was awarded $9 million in September from the U.S. National Institutes of Health (NIH) to become a Senator Paul D. Wellstone Muscular Dystrophy Cooperative Research Center.

Louis Kunkel, professor of genetics and pediatrics at Harvard Medical School and chairman of MDA’s Scientific Advisory Committee, was named co-director of the new center, with Charles Emerson Jr., senior scientist and director at BBRI.

Kunkel, a longtime MDA adviser who has received several MDA research grants, was on the MDA-funded scientific team at Harvard Medical School and Children’s Hospital in Boston that first identified the gene for Duchenne muscular dystrophy in 1986.

The BBRI center will focus on facioscapulohumeral muscular dystrophy (FSHD) research.

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MDA grantee Ronald Cohn receives award

Ronald Cohn
Ronald Cohn, an MDA grantee at Johns Hopkins University, received a 2008 Director’s New Innovator Award from the U.S. National Institutes of Health.

Ronald Cohn, an MDA-supported researcher at the McKusick-Nathans Institute of Genetic Medicine at Johns Hopkins University in Baltimore, received a 2008 Director’s New Innovator Award from the U.S. National Institutes of Health (NIH).

Cohn, an assistant professor of pediatrics and neurology, is studying the biology of muscle regeneration as it relates to various inherited and acquired muscle diseases. His MDA-funded research is focused on whether blocking a protein called TGF-beta can improve muscle health in muscular dystrophies.

The NIH Director’s New Innovator Award was created in 2007 to support a small number of new investigators whose research the Institutes judge is highly innovative and has the potential to produce a major impact on biomedical or behavioral research.

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