This year, the FSHD Society – empowered by you – launched an aggressive plan to accelerate therapeutic development for FSHD. We brought together pharmaceutical companies, researchers, government agencies, and families in a working collaborative with the goal of delivering disease-modifying therapies by 2025. Your support, activity, perseverance, and faithfulness has allowed us to be here,… Read More »
The 2019 Year-End Report
Los Angeles Walk & Roll to Cure FSHD makes the news
Our inaugural Los Angeles Walk & Roll to Cure FSHD made the local TV news in Torrance, CA, this week! The event was organized by the Los Angeles chapter of the FSHD Society. Bravo to Walk leader Selina Lai for her energetic networking and advocacy to raise awareness of FSH muscular dystrophy with the broader… Read More »
Meet Dan Levy of Schitt’s Creek!
Big news! We’ve teamed up with the online fundraising platform Omaze to give you the chance to meet Dan Levy, of Schitt’s Creek. Dan is the co-creator and star of the hit comedy series, a 2019 Prime Time Emmy award multi-nominee including Outstanding Comedy Series. Donate through Omaze for chances to win a VIP trip to… Read More »
FSHD Society Announces 2020 Conferences
The nation’s capital will host the world’s premier conferences on facioscapulohumeral muscular dystrophy for all stakeholders The FSHD Society’s 27th annual International Research Congress (IRC) will be held on June 25-26, 2020, at the Washington Hilton in Washington, DC. It will be followed on June 27-28 by FSHD Connect, the Society’s biennial global conference bringing… Read More »
Chicagoland FSHD Family Day on October 20
Join us for the first-ever FSHD Family Day Conference to grace the shores of Lake Michigan. Join family, friends, and fellow travelers living with FSH muscular dystrophy for a wonderful half day of learning and connecting. You’ll meet the region’s leading doctors and specialists, such as Drs. Charulatha Nagar and Don McGovern, to learn about… Read More »