WATERTOWN, Mass., Oct. 8 A Ribbon Cutting Ceremony tolaunch the new Senator Wellstone Muscular Dystrophy Cooperative ResearchCenter at Boston Biomedical Research Institute (BBRI) will take place Friday,October 10, at the Institute in Watertown, Massachusetts. This event willfeature the team of collaborators, including patient advocates, academicresearchers, and pharmaceutical companies, who have long campaigned to createthis center. It is the first Wellstone Center in New England and the firstcenter worldwide to focus solely on facioscapulohumeral muscular dystrophy(FSHD), the second most prevalent adult muscular dystrophy affecting at leastone in 20,000 people globally, currently without treatments or cures.
of BBRI and Louis Kunkel, co-director of Wellstone Center & director of theGenomics Program at Children's Hospital, will have opening remarks;
neurosurgeon in Monterey, CA, will introduce FSH patients, Stuart Lai, asoftware engineer at Goldman Sachs in New York, and Justin Cohen, a freshmanat Tufts University and originally from Kingston, New York, who will speakabout "Patient Perspectives on the Wellstone";
-- Dr. Emerson will recognize the Wellstone Center
collaborators: Dr. Robert J. Bloch, University of Maryland School of Medicine;Dr. Jeffery B. Miller, Boston Biomedical; Dr. Kathryn Wagner, The JohnsHopkins Hospital; Dr. Woodring Wright, University of Texas SouthwesternMedical Center; Dr. Mayana Zata, University of Sao Paulo, Brazil; andWellstone Center's corporate partners Genzyme Corporation and AcceleronPharma;
Society, will give a thank you statement and will cut the ribbon with Lewis,Lai, and Cohen.
The National Institutes of Health recently awarded Boston Biomedical andits partners $9 million to establish the center for FSH, a devastating diseasecharacterized by weakening of the skeletal muscles, beginning in the face andslowly progressing to the shoulder and upper-arm muscles and then down to theabdominal and foot-extensor muscles. In the worst cases, all skeletal musclesare lost, hearing and vision are involved, and respiratory insufficiency cancause severe disability and even death.
Like the five other Wellstone centers established since 2002, the Bostoncenter is the legacy of Sen. Paul Wellstone, who was the Congressionalchampion of muscular dystrophy. Perez and the Senator worked on the originalMD Care Act 2001 legislation before the Senator's untimely death in a planecrash in 2002. The new center at BBRI represents a paradigm shift in researchbecause of its intensely collaborative nature and particularly because of itsmandate to include the patient advocacy organizations as a full partner in theresearch process.
The Wellstone center partners will identify molecular biomarkers tomonitor the effectiveness of therapeutics during clinical trials and establisha repository of FSHD-diseased and normal muscle stem cells to provide theinternational community with the resources critically needed to develop andtest new drug and cell-based therapeutics. A key component of the WellstoneCenter will be to educate and train the next generation of research andclinical scientists in an outstanding environment for muscle disease research.Sen. Edward M. Kennedy, D-Massachusetts, offered congratulations to the centerand collaborators: "I am so very glad to hear this news. That's wonderful --and a huge tribute to all you've done ... . Bravo!"
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Elizabeth Erickson, 617-610-0771, firstname.lastname@example.orgWHAT: Opening of Wellstone Muscular Dystrophy Center WHEN: Friday, October 10, 2008, 4 to 6 p.m. WHERE: Boston Biomedical Research Institute 64 Grove Street, Watertown, MA WHO: Main speakers: -- Dr. Charles Emerson, director of Wellstone Center & director
SOURCE Boston Biomedical Research Institute