FSH Society’s International Meeting to Bring Together Patients and Researchers From Around the World to Explore New Insights on Rare Disease

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Massachusetts Senator Elizabeth Warren Expresses Support for Boston FSHD Connect Meeting

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The FSH Society’s Biennial ‘FSHD Connect’ meeting is crucial to our tight-knit 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.

The FSH Society, the Massachusetts-based charitable non-profit organization that has transformed the science of a little-known disease, facioscapulohumeral muscular dystrophy (FSHD), today announced its Biennial “FSHD Connect” International Network Meeting. The meeting, being held August 16-17, 2014 at the Westin Boston Waterfront hotel, will be one of the largest gatherings of FSHD patients, clinicians and researchers providing two days of immersive learning and community-building. Massachusetts Senator Elizabeth Warren has recorded a video welcoming attendees to the meeting and expressing her support for FSHD research and awareness. Warren is also a supporter of the MD Care Act, which was recently approved by the House of Representatives and is expected to pass the Senate vote in the coming days.

This year’s meeting will feature talks by prominent leaders in the field of FSHD, including presentations from international clinical and research centers, question-and-answer panel sessions and educational workshops. Researchers and clinicians from the University of Massachusetts Medical School NIH Senator Paul Wellstone Center for FSHD will be in attendance, and are hoping to gather a robust set of DNA samples to be studied after the event. Other notable meeting speakers and sessions include:

  •     Louis Kunkel, Boston Children’s Hospital & Harvard Medical School: “Modeling FSHD in Zebrafish for Therapy Development”
  •     Kathryn Wagner, Kennedy Krieger Institute: “Animal models and progress toward clinical trials”
  •     Peter Jones, University of Massachusetts Medical School: “Genetically similar epigenetically different: Insights from FSHD from studying discordant families”
  •     Michael Kyba, University of Minnesota: “Discovering and testing therapeutics”
  •     Kofi Boahene, Johns Hopkins University Medical School: “Surgical and nonsurgical options for facial reanimation in FSHD”

Breakout sessions for patient networking and community building will cover topics including:

  •     Parents of children with FSHD (Ray Huml, FSHD patient)
  •     Living with constant change (Daniel Perez, FSH Society President &CEO)
  •     Traveling with FSHD (Cyndi Segroves and Ray Jordan, FSHD patients)
  •     Exercise and athletics (Kristin Duquette, FSHD patient and U.S. Paralympic athlete)
  •     Navigating FSHD in relationships for teens and young adults (Hillary Michel, FSHD patients)

“It’s a very rare occurrence that we are able to convene more than 200 FSHD patients, clinicians and researchers in one location,” said Daniel Perez, President and CEO of The FSH Society. “The FSH Society’s Biennial ‘FSHD Connect’ meeting is crucial to our tight-knit 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.”

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 http://www.fshsociety.org. For more information about FSHD, please contact the Society at 781-301-6649.

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June Kinoshita

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