FSHD University is your center for advanced education about the art and science of living with FSH muscular dystrophy.
The inspiration for FSHD-U emerged from the success of Sequester Camp, the weekly program launched by the FSHD Society team when the Covid-19 pandemic forced widespread social distance. Our "camp activities" were aimed at supporting the community in taking care of physical and mental health during this stressful time, while also feeding the collective hunger for more information and knowledge about research. As society started to re-open and try to find a new normal, we decided it was time for our camp to graduate and become a university!
Initially, we will focus on these 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
September 17, 1:00 PM ET - Webinar: Questions & Answers about muscular dystrophy, with Kathryn Wagner, MD PhD.
October 1, 1:00 PM ET - Webinar: COVID-19 Response Survey report, with Katy Eichinger, DPT, and Leann Lewis, MSGC, from the University of Rochester Fields Center for FSHD Research.
October 13, 5:00 PM ET - Wellness Hour, open conversations for patients, "sharegivers", and other community members. Sign up information is posted on our Events Calendar.
October 15, 1:00 PM ET - Webinar: Accelerating Therapy Development - The Patient Community Role, with Molly White, Dyne Therapeutics.
FSHD University webinars will be held on the third Thursday of every month at 1:00-2:00 PM ET. To register for the series, click on the link below.
Departments
Physical Health
Best practices in medical care, physical therapy, and exercise for FSHD can improve health and overall function in many individuals.
Wellness
Disability and unpredictability take a toll on mental health and well-being. Learn how to manage stress and anxiety and find happiness.
Research
Understanding research can guide best practices in care and empower you to engage in impactful ways with research and drug development.
Disclaimer
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.