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In fact, both Emerson and Kunkel admit that without the advocacy of Daniel Paul Perez, FSHD patient, resident of Bedford, MA, and the founder and CEO of the FSH Society, the new Wellstone Center might not have become a reality. According to the two scientists, Perez has been fighting tirelessly behind the scenes and in front of Congress, the NIH and the scientific community for 20 years for funds, increased research and attention for this disease. "This is a victory for all of us," says Perez. "It represents decades of work by dedicated researchers, Society leaders and patients to find a research home for this disease." Perez was diagnosed as a toddler and has been the national leader for patients with FSHD since graduating from college.
Another major collaborator will be Acceleron Pharma, a biotech company that will partner with the Wellstone Center scientists and clinicians to determine the safety and effectiveness of a new class of drugs that enhance muscle mass and strength. The hope is that these drugs will help maintain muscle strength and physical function in patients with FSHD and other dystrophies.
Additionally, Genzyme Corporation will participate in the development of cell-based therapeutic approaches, which also have noteworthy promise.
Economically, the Wellstone Center will have a positive impact,
according to Bob Coughlin, president of Massachusetts Biotechnology
Council, who believes it is just the kind of program that will strengthen
the regional economy and the life science industry in Massachusetts. "The
new center at Boston Biomedical Research Institute will be a magnet for
drawing talent into the state," says Coughlin, adding, "we applaud the
partners of the Wellstone Center for their commitment to cooperating on
this importa
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