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!
Sharegiver Hour – Mindfulness meditation
8:00 - 9:00 PM ET | 7-8pm CT | 6-7pm MT | 5-6pm PT Jennifer Egert, PhD Join psychologist and mindfulness instructor Jennifer Egert, PhD, to learn about mindfulness meditation... Read More »
FSHD Univeristy – Physical therapy for shoulder dyskinesia
1:00 PM ET | noon CT | 11:00 AM MT | 10:00 AM PT Presented by Jos IJspeert, MSc, Radboud University Medical Center Jos IJspeert, Radboud University Medical Center Shoulder... Read More »
FSHD Radio: Hot off the Press with Jamshid Arjomand, PhD
Facebook and YouTubeThursday, January 27th 9:00 PM ET | 8:00 PM CT | 7:00 PM MT | 6:00 PM PT On the 4th Thursday of every month, join us for FSHD Radio:... Read More »
FSHD University video playlist
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Orthotics for Knee Hyperextension
Bob Meier, certified orthotist, presents on a topic that is not uncommon in people with FSHD: knee hyperextension. During walking, certain muscles are activated so that the human knee never even reaches full or terminal extension. This mechanism protects the largest ligament in the knee which acts as a back-up to stabilize against knee hyperextension. With any neuromuscular condition that interferes with those muscles, the potential exists for someone to develop knee hyperextension. This program will look at various means of minimizing the occurrence of, or controlling the condition once it exists. Those options can include just an Ankle Foot Orthosis (AFO), just a hyperextension Knee Orthosis (KO) or a combination of both, a Knee Ankle Foot Orthosis (KAFO).
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, Europe and Australia on gait assessment, rehabilitation and orthotics. He holds six patents involving orthotics and applied biomechanics for spine and lower extremity applications.
We are grateful to Allard for sponsoring this educational webinar. Please note that the FSHD Society does not give medical advice or endorse any products or services discussed in our educational programs. You should consult your own medical provider about any treatments and interventions. -
Drug Development Update with Jeffrey Statland
Jeffrey Statland, MD, is co-director of the FSHD Clinical Trial Research Network and professor of neurology at the University of Kansas Medical Center. Dr. Statland has his finger on the pulse of all FSHD clinical trials, past, present, and future. He will share an overview of progress in drug development research and clinical trials being conducted by biopharmaceutical companies and academic labs. Learn about current strategies for treating, slowing, and possibly stopping FSHD, how far these strategies have progressed, the time frame for clinical trials, and more. Find out what the FSHD community can do today to be “trial ready” for the near future. -
Reproductive genetic counseling and pregnancy
From the FSHD University webinar series. With Sanne Vincenten, MD, and Nicol Voermans, MD PhD, of Radboud University Medical Center, the Netherlands. Drs. Vincenten and Voermans recently co-wrote an article on FSHD genetics and reproductive counseling, together with a group of Dutch neurologists and clinical geneticists. In this webinar, Drs. Vincenten and Voermans will discuss FSHD inheritance, prenatal diagnostics and preimplantation diagnostic options. We answer questions from the audience.
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? Our weekly program of health, fitness, and research webinars launched at the start of the Covid-19 lockdown (March-June 2020). Access all that great 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.