FSH Society International Research Consortium Gathers Researchers and Clinicians from Around the World in Race to Cure FSHD

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October 5-6, 2015 at the Westin Waterfront in Downtown Boston

BOSTON – (October 1, 2015) – The FSH Society, the award-winning non-profit and global leader in the quest to cure Facioscapulohumeral Muscular Dystrophy (FSHD), will hold their 19th annual International Research Consortium and Planning Meeting October 5 -6, 2015 in Boston, MA. The event brings together clinicians, scientists, industry, patient representatives and policy makers to discuss the latest developments in FSHD. For twenty years this gathering has provided the FSHD community with a forum to present and discuss new findings, reinforce collaborative efforts, facilitate new initiatives and coordinate research and clinical activities.

“Impressive scientific progress has been made in recent years and months in our understanding of the disease,” said Daniel Perez, founder and president of the FSH Society. “This is a critically important time for the community to convene and discuss new data and advances in FSHD, strategies to verify and independently corroborate the findings and focus efforts and resources in the preclinical gap and translational phase of research. We also need to improve diagnostic techniques and criteria for FSHD and consider and evaluate how to move forward with new and existing therapies for the disorder.”

The workshop has an open and free admissions policy for clinicians, scientists and representatives of funding organizations. Taking place at the Westin Boston Waterfront Hotel Marina Ballroom in downtown Boston, the workshop includes platform, poster presentations and round table discussions. For more information, or to register for the event please visit: https://www.fshsociety.org/fsh-events/fsh-society-international-research-consortium-workshop/

Event sponsors include: Acceleron, Association Français contre les Myopathies, aTyr Pharma, BioMarin, Facio-Therapies, FSHD Canada Foundation, FSHD Global Foundation, The FSH Society, Genomic Vision, Genzyme/Sanofi, Idera, Muscular Dystrophy Campaign (UK), NIH NICHD UMassMed Senator Paul Wellstone MD Cooperative Research Center for FSHD, Sarepta.

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About 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 seed grants to pioneering research worldwide, creating an international collaborative network of patients and researchers. The FSH Society seeks to serve as a source of information and support for all patients and families with FSHD; act as a driving force in the development of research directed towards treatments and ultimately a cure; and bring support to patients and research for FSHD through effective engagement of governmental and private sector organizations and entities. For seven consecutive years, the Society has received the Charity Navigator’s four-star rating, the highest distinction held by less than two percent of non-profit organizations in the country. The FSH Society offers a community of support, news and information for FSHD patients and families through its website at http://www.fshsociety.org. For more information about FSHD, please contact the Society at 781-301-6649.

Press Contacts:
June Kinoshita: The FSH Society
781.301.6649; june.kinoshita(at)fshsociety(dot)org

Theresa Masnik: SHIFT Communications
617.779.1871; FSHSociety(at)shiftcomm(dot)com

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