Massachusetts Senator Elizabeth Warren Expresses Support for FSH Society’s International Meeting in Boston

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FSHD Connect Unites Patients, Doctors and Researchers to Explore New Insights on Rare Disease

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The FSH Society, the Massachusetts-based charitable non-profit organization, is pleased to announce that Senator Elizabeth Warren expressed her support for the Biennial “FSHD Connect” International Network Meeting and FSHD research and awareness, in her opening video remarks on Saturday, August 16. The meeting, held August 16-17, 2014 at the Westin Boston Waterfront hotel, was one of the largest gatherings of Facioscapulohumeral muscular dystrophy (FSHD) patients, clinicians and researchers providing two days of immersive learning and community-building.

“This is such an important event. By bringing together a strong grassroots network of FSHD doctors, researchers and patients from around the country and around the world, the FSH Society is advancing the fight to treat and cure FSHD,” said Senator Elizabeth Warren in her video remarks. “I’m proud that the FSH Society is based right here in Massachusetts. I’m also proud that the University of Massachusetts Medical School is home to a Senator Paul Wellstone Muscular Dystrophy Cooperative Research Center.”

In her welcoming keynote, Senator Warren expressed her support for the National Institutes of Health’s funded research, such as the work undertaken at the University of Massachusetts Medical School NIH Senator Paul Wellstone Center for FSHD. Warren emphasizes her commitment to strengthening NIH funding and fighting to renew the United States’ commitment to critical medical and scientific research.

Warren is a co-signer of the Muscular Dystrophy Community Assistance Research and Education Act of 2014 (MD CARE Act), which mandates research and investigation into all forms of Muscular Dystrophy. The act was recently approved by the House of Representatives and is expected to pass the Senate vote in the coming days. Senator Warren also encouraged the FSHD community to continue its grassroots efforts outside of Washington, D.C. that pressure legislators and have a lasting, significant impact for FSHD patients and their families.

“The FSH Society was a key participant in drafting the MD Care Act and we greatly appreciate Senator Warren’s support in this initiative,” said Dan Perez, FSH Society co-founder, President and CEO. “The MD CARE Act has helped provide nearly $462 million dollars in additional NIH funding since its inception and we’re hopeful that the act will be a continuing reality for the FSHD community.”

This year’s Biennial FSHD Connect International Network Meeting featured talks by prominent local, national and international leaders in the field of FSHD. The meeting, which gathered more than 200 FSHD patients, clinicians and researchers in one location, is crucial to the close-knit FSHD community and represents a special opportunity to network with experts in the space as well as interact with and learn from those affected firsthand by the disease. Patients have come from as far away as Australia and Kenya for the unique opportunity to meet so many other patients and experts.

FSHD, one of the most prevalent types of muscular dystrophy, is a degenerative muscle disease that causes progressive weakness, usually starting with the face, shoulder and arms, but which can attack almost any skeletal muscle. FSHD affects approximately 500,000 people worldwide and between one and two percent of the population carries a genetic trait that places future generations at risk of the disease. Currently, there is no treatment or cure. However, recent scientific breakthroughs are fueling an upsurge of interest among biotechs and pharmas in developing treatments.

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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 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 six consecutive years, the Society has received the Charity Navigator’s four-star rating, the highest distinction held by less than four 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 For more information about FSHD, please contact the Society at 781-301-6649.

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June Kinoshita

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