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To crack the code of FSHD, patients are essential. Every breakthrough in FSHD has been made because patients and their family members got involved. We are hopeful that a treatment is within sight; your participation will move us closer to discovery.
FSH Muscular Dystrophy is highly variable, even among affected family members. Each person has their own unique journey with FSHD. The FSHD Society is here to educate and empower individuals to live their best lives, physically and mentally.
There is great power in community. Around the globe, individuals with FSHD are living proof of that. When we come together, each bringing our unique strengths to bear, we inspire each other to 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).
Education: A Patient's Best Weapon for Change
FSHD University is your center for advanced education about the art and science of living with FSH muscular dystrophy. Our webinars and other resources are designed to empower individuals with FSHD to live their best lives, physically and mentally. Our departments of Physical Health, Wellness, and Research provide treasure troves of videos, articles, and resource lists, provided by the world's top experts, including many people living with FSHD. FSHD University is a place for you to gain knowledge, make friends, and find hope.
Latest Blog Posts
Bowel and urinary issues in FSHD
We know that patients are the experts when it comes to understanding the impacts of FSHD on their health and well-being. That’s why when we saw many discussions on social media about gastrointestinal and urinary health issues, we initiated a study in collaboration with researchers at the University of Iowa to find out if these…
$3.4 million to speed us on our journey (Part 3)
The foundations on which drug development happens “Infrastructure is basic physical and organizational structures…needed for the operation of a society or enterprise.” —Oxford Dictionary In a rare condition like FSHD, it’s unlikely for any one research center to be able to…
Upcoming Events
Women on Wellness: On Mattering
Zoom Virtual MeetingFirst Wednesday of every month 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT This month we'll be talking about "mattering," feeling valued as a woman, while living with the challenges of FSHD. We will also discuss depression, the potential high prevalence in individuals with chronic diseases -identifying signs and symptoms,...
Feeling Fit with FSHD: Qigong for immune system and energy
12:00 PM Noon ET | 11:00 AM CT | 10:00 AM MT | 9:00 AM PT “FSHD is always attacking me… it never takes a day off. I practice qigong and kung fu daily. It’s my way to fight back.” -FH In the December “Feeling Fit” sessions, Frank Hanley will introduce several qigong exercises to...
Wellness Hour: Holiday revels
Zoom Virtual Meeting5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT This month, you're invited to come dressed in Zoom-worthy holiday apparel, with favorite seasonal libations in hand! The Wellness Hour is open to everyone in the FSHD community. We'll have an open-ended conversation about how group members would like to...
The FSHD Society is a convener and collaborator to find solutions, but we can’t do it alone. Your participation is vital to ending the suffering caused by FSH Muscular Dystrophy (FSHD). There are many ways you can get involved and play an active role.