The Senator Paul D. Wellstone Muscular Dystrophy Cooperative Research Center (CRC)--named for the late Senator Paul Wellstone -- has been established at Boston Biomedical Research Institute to study facioscapulohumeral muscular dystrophy (FSHD) and other muscle diseases and provide a cell repository as a resource for the study of neuromuscular diseases. This Center represents a new paradigm that brings together a unique collaboration of researchers, clinicians, patients, government research agencies and pharmaceutical/biomedical companies to study the causes and potential treatments for FSHD, a muscle weakening and disabling disease (the second most prevalent adult muscular dystrophy) that affects, at the least, one in 20,000 individuals worldwide. This research is done in a highly collaborative process which spans the discovery pipeline from basic research to translational research to clinical trials to delivery to the patients.

The Wellstone Center will enable basic, translational, and clinical research—the full “discovery pipeline”—in order to understand how muscles grow and deteriorate and to develop new therapies for those with FSHD.

This center for excellence is the only CRC in New England, and one of six in the United States. The Wellstone MD CRCs themselves represent a paradigm shift in research because of their intensely collaborative nature and particularly because of their mandate to include the patient advocacy organizations as a full partner in the research process.

What is FSHD?
Its major characteristic is weakening of the skeletal muscles, beginning in the face and slowly progressing to the shoulder and upper-arm muscles and then down to the abdominal and foot-extensor muscles. In the worst cases, all skeletal muscles are lost, hearing and vision are involved, and respiratory insufficiency can cause severe disability and even death.

Click here to visit the Senator Paul D. Wellstone Muscular Dystrophy Cooperative Research Center for FSHD website.

Investigators

Center Director and Principal Investigator of the Administrative Core [PI] Charles P. Emerson, Jr., Ph.D., Director and Senior Scientist Boston Biomedical Research Institute, Watertown, Massachusetts
Oliver King, Ph.D., Scientist, Bioinformatics and Computational Biology Boston Biomedical Research Institute, Watertown, Massachusetts
[PI] Jeffrey Boone Miller, Ph.D., Senior Scientist at Boston Biomedical Research Institute and Associate Professor of Neurology at Harvard Medical School Boston Biomedical Research Institute, Watertown, Massachusetts

Center Co-Director [PI] Louis M. Kunkel, Ph.D., Director, Genomics Program, Department of Medicine and Investigator with the Howard Hughes Medical Institute and Professor of Pediatrics and of Genetics at Harvard Medical School Children's Hospital, Boston, Massachusetts
[PI] Robert J. Bloch, Ph.D., Professor, Department of Physiology, School of Medicine, and, Director, Training Program in Membrane Biology University of Maryland School of Medicine, Baltimore, Maryland
Alvin Kho, Ph.D., Research Fellow in Medicine The Children's Hospital, Boston, Massachusetts
Steven Moore, M.D., Ph.D. [Iowa Wellstone MD CRC] Department of Pathology, University of Iowa College of Medicine, and, Co-Director of the University of Iowa Wellstone MD CRC University of Iowa, Iowa City, Iowa
Daniel P. Perez, A.B., President and CEO FSH Society, Inc., Bedford, Massachusetts
[PI] Kathryn Wagner, M.D., Ph.D., [Kennedy Krieger Institute, Johns Hopkins / University of Pennsylvania Wellstone MD CRC] Associate Professor Neurology and Neuroscience, Co-Director of The Johns Hopkins Muscular Dystrophy Association Clinic and Co-Director of The Johns Hopkins/ University of Pennsylvania Senator Paul D. Wellstone Muscular Dystrophy Cooperative Research Center The Johns Hopkins Hospital, Baltimore, Maryland
Woodring E. Wright, M.D., Ph.D., Southland Financial Corp. Distinguished Chair in Geriatric Research and Professor of Cell Biology UT Southwestern Medical Center, Dallas, Texas
Austin Yang, Ph.D., Faculty Director Proteomics Core of the University of Maryland Marlene and Stewart Greenbaum Cancer Center and Associate Professor of Anatomy and Neurobiology University of Maryland School of Medicine, Baltimore, Maryland
Mayana Zatz, Ph.D., Dean of Research, Professor

Government, Industry, Non-Profit Academic Partners

Kevin Flanigan, M.D., Associate Professor of Neurology, Adjunct Associate Professor of Human Genetics, and Adjunct Assistant Professor of Pediatrics and Pathology at Eccles Institute of Genetics University of Utah School of Medicine, Salt Lake City, Utah
Stephen D. Hauschka, Ph.D., [University of Washington Wellstone MD CRC] Professor of Biochemistry University of Washington, Seattle Washington
Richard T. Moxley, III, M.D., [University of Rochester Wellstone MD CRC and NIH Registry for FSHD/DM Patients and Families] Professor of Neurology and Pediatrics, and Director, University of Rochester Wellstone MD CRC University of Rochester, Rochester, New York
Terence A. Partridge Ph.D., FMedSci, [CNMC DC Wellstone MD CRC] Researcher