FSHD University is your center for advanced education about the art and science of living with FSH muscular dystrophy.
We will focus on three "departments" (see below) – Physical Health, Wellness, and Research – drawing on the many resourceful, creative people in our community who have earned their MDs and PhDs in living with FSHD. Over time, we expect to establish new departments to address additional areas where we see a thirst for knowledge. Your input and suggestions are very much welcome. This is YOUR university!
Upcoming Events › FSHD Radio
1:00 PM ET | 12:00 PM CT | 11:00 AM MT | 10:00 AM PT Many individuals diagnosed with FSHD feel that they are unemployable or they should just give up and file for disability benefits. Lynn Stevens will talk about employment fallacies, assistive devices that can help you remain employed, career change strategies and where to turn for help in making such an important decision. Lynn Stevens is the Director of Workforce Development for Goodwill Industries of North Louisiana…Find out more »
8:00 - 9:00 PM ET This monthly meeting is for those of you who are providing care to loved ones with FSHD. This virtual meeting is a safe and supportive space to share your experiences, challenges, and helpful tips with other caregivers. Please respect our rules restricting this meeting to caregivers (or "sharegivers," as Isaac Prilleltensky has proposed, because providing care to loved ones is a two-way street). Because we don't want to publicly post the Zoom meeting link (to…Find out more »
1:00 pm ET | 12:00 pm CT | 11:00 am MT | 10:00 am PT Kate Eichinger, DPT, and Johanna Hamel, MD. Presented by Johanna Hamel, MD, and Kate Eichinger, DPT, from the University of Rochester Medical School. When doctors diagnose individuals with a progressive condition like FSH muscular dystrophy (FSHD), they’re often asked, What does the future look like? Will I need to use an orthotic brace? How long do I have before I need to use a walker…Find out more »
FSHD University video playlist
Best practices in medical care, physical therapy, and exercise for FSHD can improve health and overall function in many individuals.
Disability and unpredictability take a toll on mental health and well-being. Learn how to manage stress and anxiety and find happiness.
Understanding research can guide best practices in care and empower you to engage in impactful ways with research and drug development.
Information provided by the FSHD Society does not imply an endorsement of any of the drugs, procedures, treatments, or products discussed. Please consult your own healthcare provider about any medical interventions.