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The FSH Society Issues Research Grant for Developing New Facioscapulohumeral Dystrophy Muscular Measurement Tool
Date:8/6/2013

rders. By applying this measurement technique to FSHD, clinicians could potentially identify muscle changes in patients before the muscles atrophy and weaken. EIM would also offer a way to document changes in muscles characteristically affected by FSHD which are not captured by traditional strength testing, such as facial muscles.

“This new study is an important step in the ongoing research around treatments and cures for FSHD,” said Daniel Paul Perez, President & CEO of the FSH Society “The grant will enable Dr. Statland and University of Rochester researchers to further develop their FSHD clinical trial tool-kit and expand current research efforts, bringing us closer to finding cost-effective treatments for FSHD.”

Dr. Statland and his team plan to recruit 20 participants with FSHD for four visits over 12 months of follow-up to test the reliability, validity and initial responsiveness to change of EIM in FSHD. They are seeking patients with genetic confirmation that are clinically affected by the disease and can walk. Patients with these qualifications that are interested in participating can contact Colleen Donlin-Smith at 585-275-7680 or Colleen_Donlin-Smith(at)urmc(dot)rochester(dot)edu.

The EIM pilot study will serve as a structural correlate for a FSHD observational study already underway at the University of Rochester Medical Center. Dr. Statland, in collaboration with Rabi Tawil, M.D. and experts at the Fields Center for FSHD and Neuromuscular Research University of Rochester Medical Center, received a prior grant of $55,597 for this study from the FSH Society in January 2013 to evaluate the reliability and concurrent validity of disease-specific patient reported outcome and evaluator administered functional rating scale.

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About the FSH Society
The FSH Society, founded in 1991 by two FSHD patients, is a world leader in combating muscular dystrophy. The non-profit has provided millions of dollars in
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