This Saturday, June 20, 2020, the FSHD Society, the world’s largest research-focused patient organization for facioscapulohumeral muscular dystrophy (FSHD), will be joined by dozens of advocacy groups and allies around the world in celebrating the fifth annual World FSHD Day, a global 24-hour campaign to raise awareness for the disease. On World FSHD Day, the Society will… Read More »
Landmarks and Social Media Are Turning Orange This World FSHD Day
CEO’s 2020 second quarter report
Mark Stone, the FSHD Society’s president and CEO, reported on the Society’s activities at his second quarter report to stakeholders on May 20, 2020. The webinar recording is now available (click below). He highlighted how the FSHD Society’s research initiatives, International Research Congress, FSHD Connect conference, Voice of the Patient Forum, community support, and fundraising… Read More »
The 2019 Year-End Report
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 »
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 »