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

The FSH Society, the Massachusetts-based charitable foundation that has transformed the science of a little-known disease, facioscapulohumeral muscular dystrophy (FSHD), today announced its Biennial International Network Meeting. The meeting will be the one of the largest gatherings of FSHD patients, clinicians and researchers providing two days of immersive learning and community-building. The event will be held August 16-17, 2014 at the Westin Boston Waterfront hotel in Boston, Mass.

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 from the University of Massachusetts Medical School 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:

• Peter Jones, University of Massachusetts Medical School: “Genetically similar epigenetically different: Insights from FSHD from studying discordant families”
• Louis Kunkel, Boston Children’s Hospital & Harvard Medical School: “Modeling FSHD in Zebrafish for Therapy Development”
• Michael Kyba, University of Minnesota: “Discovering and testing therapeutics”
• Kathryn Wagner, Kennedy Krieger Institute: “Animal models and progress toward clinical trials”
• 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, Ben Brittain, Carden Wyckoff, 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 International Network Meeting is crucial to our tightknit 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.

Event Details:

• What: FSH Society Biennial International Network Meeting
• Where: The Westin Boston Waterfront, 425 Summer Street, Boston MA 02210
• When: August 16 (Saturday) – August 17 (Sunday), 2014
• Full meeting agenda: https://www.fshdsociety.org/assets/pdf/FSHSociety2014BostonFSHDConnectMeetingAgenda_TentativeProgram.pdf
• Registration: https://www.fshdsociety.org/events/biennial-fshd-connect-meeting-2/