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!
November 9, 5:00 PM ET - Wellness Hour. This month, we invite you to read this thought-provoking article in TIME magazine by Rebekah Taussig: “I’ve Been Paralyzed Since I Was 3. Here’s Why Kindness Toward Disabled People Is More Complicated Than You Think.” Of course, you don’t have to read it to participate, but we thought it would be an interesting conversation-starter. Pre-registration required.
November 19, 1:00 PM ET - Webinar: The Utah FSHD Study. Shining a spotlight on an ambitious FSHD genetic study led by Russell Butterfield, MD, PhD and Bob Weiss, PhD of the University of Utah. One of the landmark studies in FSHD.
November 24, 8:00 PM ET - Sharegiver Hour. 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. Pre-registration required.
December 14, 5:00 PM ET - Wellness Hour. Your time for conversation and sharing. Pre-registration required.
December 17, 1:00 PM ET - Webinar: Bracing for spine and knee issues. This month’s webinar addresses two frequently mentioned topics for the FSHD Community: knee hyperextension and spinal issues such as lordosis that result from the weakening of core muscles.Sponsored educational content brought to you by Allard.
FSHD University webinars will be held on the third Thursday of every month at 1:00-2:00 PM ET. To register for the webinar series, click on the link below.
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.