WATERTOWN, Mass. -- Last week, physicians, scientists, patients and members of the biotech industry from around the world gathered for the first major meeting of a unique research center on muscular dystrophy -- the Senator Paul D. Wellstone Muscular Dystrophy Cooperative Research Center.

Established last year and based at Boston Biomedical Research Institute (BBRI) in Watertown, MA, it is the only Wellstone Center and the only center in the world to focus solely on finding treatments and cures for the second most common adult form of MD known as facioscapulohumeral (FSH) muscular dystrophy. It is also the only Wellstone Center (there are five others in the US) in New England.

The purpose of the two-day retreat (June 16-18) was for world experts on this debilitating disease to present their current research findings, discuss and plan collaborative projects and fine-tune future research.

"We accomplished a great deal during this first gathering," said Dr. Charles Emerson, director of Boston Biomedical Research Institute and the Wellstone Center. "This was a wonderful opportunity to bring together the best minds involved in FSH research. We heard from individuals involved with this disease from Australia to Brazil to Iowa to Children's Hospital here in Boston. Their perspectives inform our direction moving forward."

FSH, which affects at least one in 20,000 adults worldwide, is characterized by a 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.

The six Wellstone Centers -- inspired by and named for the late Senator Paul D. Wellstone and funded by the National Institutes of Health --represent a paradigm shift in research because of their intensely collaborative nature and especially because of their desire and mandate to include patient advocacy organizations as full partners in the research process.

Meeting participants came from BBRI, the FSH Society, Harvard, Acceleron and Novartis, Johns Hopkins Medical Institute, University of Maryland, University of Texas, Southwestern, University of Sao Paulo in Brazil, the University of Washington, and the FSH Global Research Foundation in Australia.

The Boston Biomedical Research Institute is a not-for-profit institution dedicated to the understanding, treatment, and prevention of specific human diseases such as muscular dystrophy, cancer, cardiovascular disease, and Alzheimer's. For more information, visit us on the web at www.bbri.org.