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!
January 21, 1:00 PM ET. Introduction to whole-body MRI for FSH muscular dystrophy. MRI is a key component of Fulcrum’s ReDUX4 clinical trial for FSH muscular dystrophy. But do you really understand how this technology works, and what it can and can’t reveal? Register for this month's webinar to find out.
January 26, 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. If this is your first time, please pre-register by clicking on the link.
February 8, 5:00 PM ET. Wellness Hour. At this month's meeting, we'll be sharing experiences with chronic pain and discussing solutions. If this is your first time, please pre-register by visiting our event posting.
February 18, 1:00 PM ET. Early-onset FSH muscular dystrophy. Around 10% of individuals with FSHD have an early onset form with more obvious symptoms that lead to a diagnosis before the age of 10. These early onset FSHD individuals have a different disease trajectory and more severe motor and extraocular symptoms.
February 23, 8:00 PM ET. Sharegiver Hour. This virtual meeting is a safe and supportive space for caregivers to share experiences, challenges, and helpful tips with other caregivers. If this is your first time, please pre-register by clicking on the link.
FSHD University webinars will be held on the third Thursday of every month at 1:00-2:00 PM ET.
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.
Looking for Sequester Camp?
The inspiration for FSHD-U emerged from the success of Sequester Camp, the weekly program launched by the FSHD Society team at the start of the national Covid-19 lockdown. Our "camp activities" supported 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!
Access all that great Sequester Camp information HERE
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.