Educate Yourself
FSHD is highly variable, even among affected family members. Each person possesses a unique combination of genetic and environmental factors that influence his or her body and health in general and FSHD in particular.
To crack the code of FSHD, patients are essential. All the breakthroughs in FSHD have been made because patients and their family members got involved. We are hopeful that a treatment is within sight and your participation will move us closer to discovery.
There is great power in community. When we come together, each bringing our own unique strengths and skills, we inspire each other to go farther and reach higher than we can when we go it alone.
The FSHD Society is a convener and collaborator to find solutions, but we can’t do it alone. We need you to join us. Your participation is vital to creating a world free of the suffering caused by Facioscapulohumeral Muscular Dystrophy (FSHD).
Latest Blog Posts
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)….
miRecule, Inc., is developing a novel treatment for FSHD
In their offices in Maryland, just northwest of Washington, DC, miRecule Inc. and its founder Anthony Saleh, PhD, are hard at work developing a novel treatment for FSHD. In the early 2000s, Saleh was a graduate student at Johns Hopkins…
Upcoming Events
Oct
20
Chicagoland FSHD Family Day Conference
Location: Shirley Ryan AbilityLab, 355 East Erie Chicago, IL 60611 Deadline to register extended to October 15th! RSVP TODAY! 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...
Find out more »
Los Angeles Walk & Roll to Cure FSHD
We hope to see you on Sunday, October 27th, 2019 at Wilson Park in Torrance, CA! Please feel free to bring a picnic lunch for after the walk! To learn all about our fantastic event - Register, Donate, or become a Sponsor - please Click HERE! REGISTER NOW Please reach out to the Chapter Director, Laurie Heyman,...
Find out more »
FSHD Radio with Alan Brown of NFL films
Join host Tim Hollenback on October 30, 2019 on Facebook Live for a conversation with the fantastic Alan Brown. Originally scheduled for July 31, the show had to be rescheduled due to technical difficulties. Alan, of Holicong, Pennsylvania, is the director of business development at NFL Films, the company that produces commercials, television programs, feature films, and...
Find out more »
The FSHD Society is a convener and collaborator to find solutions, but we can’t do it alone. We need you to join us. Your participation is vital to creating a world free of the suffering caused by Facioscapulohumeral Muscular Dystrophy (FSHD).