The FSHD Society announced today that Max Adler, an actor best known for his roles on the hit series “Glee,” available for streaming on Netflix, and “Switched at Birth”, is serving as this year’s national ambassador for the Society’s signature fundraiser, Walk & Roll to Cure FSHD, taking place September 12. There are currently no… Read More »
Glee star is Walk & Roll national ambassador
FSHD Clinical Trial Research Network expands to four new sites
The FSHD Society announced today that it has awarded $300,000 a year to expand the Facioscapulohumeral Muscular Dystrophy Clinical Trial Research Network (FSHD CTRN), with consideration of follow-on funding of $300,000 a year in 2021 and 2022. The network is a consortium of academic research centers in the United States and Europe with expertise in FSHD clinical… Read More »
Nationwide Virtual Walk & Roll for FSH Muscular Dystrophy
The FSHD Society, the world’s largest research-focused patient advocacy organization for facioscapulohumeral muscular dystrophy (FSHD), announced that it will hold a slew of virtual Walk & Roll to Cure FSHD events this September 12. The online events will take the place of dozens of in-person gatherings that had been planned for this summer and fall…. Read More »
Facioscapulohumeral muscular dystrophy community speaks to the FDA
The FSHD Society is holding a landmark meeting today in which individuals and families living with facioscapulohumeral muscular dystrophy (FSHD) will tell representatives from the U.S. Food and Drug Administration (FDA) about how the muscle-wasting disease affects their health, and what they hope future treatments will do to improve their quality of life. One of… Read More »
FSHD Society opens its first global, online educational conference
The FSHD Society announced the opening today of its FSHD Connect Classroom, the first online, full-day educational conference in the organization’s history. The online conference takes the place of FSHD Connect, the premier global educational meeting for facioscapulohumeral muscular dystrophy (FSHD), which was cancelled this year due to COVID-19. Nearly 300 individuals and families living… Read More »