You can now listen to our GivingTuesday Telethon interviews from our December 3rd event. Streamed over Facebook Live, our Telethon host Tim Hollenback interviewed dozens of leaders in our community—activists, celebrities, scientists, doctors, people doing awesome things—to raise worldwide awareness of FSHD. Their stories were utterly compelling, and the sense of optimism for a treatment… Read More »
Listen to our Giving Tuesday Interviews
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 »
Activate! NFL Films’ Alan Brown
Join host Tim Hollenback this Wednesday, October 30, at 9:00 pm ET on Facebook Live for a conversation with the fantastic Alan Brown. Alan, of Holicong, Pennsylvania, is the director of business development at NFL Films, the company that produces commercials, television programs, feature films, and documentaries for and about the National Football League (NFL)…. Read More »
Patient-Focused Drug Development Meeting for FSHD
The FSHD Society announced today that the U.S. Food and Drug Administration (FDA) has approved its application to hold an externally led Patient-Focused Drug Development (EL-PFDD) meeting on facioscapulohumeral muscular dystrophy. This “voice of the patient” meeting, a key component of the Society’s Therapeutic Accelerator initiative, has been scheduled for April 21, 2020, in College… 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. REGISTER HERE. 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… Read More »