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!
Calendar
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
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Orthotics for Knee Hyperextension and Spine issues in FSHD
This FSHD University webinar addresses two frequently mentioned topics for individuals with facioscapulohumeral muscular dystrophy: knee hyperextension and spinal issues such as lordosis that result from the weakening of core muscles. Orthotic braces and supports can provide solutions for some individuals. Our speaker is Bob Meier (ABC CO #3818).
Bob has been active in the fields of orthotics, therapeutic exercise and biomechanics since 1978, and has been conducting education programs since 1982. His special interest is in applied closed chain biomechanics and muscle function. He has taught numerous courses across North America and Europe on gait assessment, rehabilitation and orthotics. He holds six patents involving orthotics and applied biomechanics for spine and lower extremity applications.
Bob has authored numerous articles and clinical/technical manuals on both rehab and orthotic products ranging from the Biomechanical Ankle Platform System (BAPS), STAR (Stability Testing And Rehabilitation) Station, Sitting, Walking, and Standing Hip (SWASH) orthosis, partial foot prosthesis, pediatric orthotic interventions and the ToeOFF composite kinetic return AFO. -
COVID-19 and facioscapulohumeral muscular dystrophy update
Recorded from the December 10, 2020, FSHD University webinar. Last spring, shortly after states began locking down, Drs. Ghinwa Dumyati and Rabi Tawil from the University of Rochester presented a webinar on the COVID-19 pandemic. In the eight months since, researchers around the world have worked at a breakneck pace to understand how the virus spreads, how it affects patients, how to treat it, and ultimately how to prevent it through a vaccine. With the holidays coming up, you may be wondering if it’s safe for families and friends to gather. We have invited Drs. Dumyati and Tawil back to provide an update and answer your questions. For more information visit fshdsociety.org. -
The History of FSH muscular dystrophy in a large Utah kindred
This webinar shines a spotlight on an ambitious Facioscapulohumeral muscular dystrophy genetic study led by Russell Butterfield, MD, PhD and Bob Weiss, PhD of the University of Utah. One of the landmark studies in FSHD involved a 1950 publication involving more than 1200 members of an extended Utah family affected by FSH muscular dystrophy and traced back to a pioneer founder born in 1775. Dr. Butterfield will introduce us to this important FSHD family and the work he and his colleagues are doing now to trace living members and enroll them in their study to identify genetic factors that control variability of symptoms in FSHD. Since all members of the kindred share the same D4Z4contraction causing FSHD, comparing the symptoms between mild and more severe individuals can help us to identify genetic variations that will help us identify factors that influence the severity and progression . These genetic variants can help us understand the basic pathobiology of FSHD and lead to new strategies for treatments. For more information, visit fshdsociety.org
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.
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
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.