2018 FSHD Connect Conference registration is now open!

Our community’s premier networking event for immersive learning and community building Our biennial FSHD Connect Conference is an amazing opportunity to meet hundreds of patients and families, as our leading thinkers share the latest in medical management of FSHD and exciting advances toward treatments. Breakout sessions will cover how to cope with practical and emotional … Read more of “2018 FSHD Connect Conference registration is now open!” »

Hot off the press: FSH Watch

The latest issue of FSH Watch is here! Highlights: Clinical Trial Research Network receives major NIH award World FSHD Day 2017 FSHD Family Day Conference in Columbus, Ohio Bone health and FSHD FSH Society’s congressional testimony Why I donated tissue Ask the physical therapist (part 3) How can I use a planned gift to support … Read more of “Hot off the press: FSH Watch” »

Ohio FSHD Family Day Conference

Strengthening our network in the Midwest The FSHD Family Day Conference, hosted by Nationwide Children’s Hospital and the FSH Society on June 11, 2017, drew about 70 patients, families, researchers, and clinicians to Columbus, Ohio. The half-day meeting provided an opportunity for two of the nation’s leading FSHD research centers to share expertise and research … Read more of “Ohio FSHD Family Day Conference” »

Our San Francisco Concert and Patient Meeting is right around the corner!

Join us for our annual San Francisco Concert and Conference, given in memory of Joyce Hakansson. Don’t miss our FSHD Family Day Conference and Songs in the Key of Steven Blier benefit concert on Saturday, July 15, at San Francisco’s Jewish Cultural Center. This is the Bay Area’s premier FSHD networking and advocacy event! Our conference provides an exceptional … Read more of “Our San Francisco Concert and Patient Meeting is right around the corner!” »

Our Manhattan Project

The FSH Society’s March 11, 2017, meeting in Manhattan was a milestone in our efforts to nurture a network of stakeholders in one of our most concentrated urban centers. Hosted by FSH Society Board member Stuart Lai, this meeting featured two stellar speakers, Matthew Harms, MD PhD, of Columbia University College of Medicine, and Jia-Ray … Read more of “Our Manhattan Project” »

2017 RAAM Kickoff Dinner

Race Across America fundraising for FSH muscular dystrophy June 15, 2017 from 4:00 – 7:00 pm Urge Gastropub & Whiskey Bank 2002 S Coast Hwy, Oceanside, CA 92054 Please complete the form below to purchase tickets and/or make a donation. Receive a free ticket for collecting $150 or more in donations. Click here to download … Read more of “2017 RAAM Kickoff Dinner” »