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 »
Progress Report on Therapeutic Accelerator for FSHD
Last week, Mark Stone, the FSHD Society president and CEO, gave his fourth-quarter progress report on the Therapeutic Accelerator for FSHD treatments. His presentation was given via webinar to leadership donors and key volunteers, including chapter directors and Walk & Roll leaders. The recorded talk and Q&A are now available on the FSHD Society’s YouTube… Read More »
The Fierce Urgency of Now
“We are now faced with the fact that tomorrow is today. We are confronted with the fierce urgency of now.” Thus Dr. Martin Luther King Jr. exhorted the nation at the March on Washington on that historic summer day in 1963. While King spoke of long-deferred dreams of equality, today in the FSHD community we… 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 »