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If you are a patient or family member, FSHD University is your center for education about the art and science of living with FSH muscular dystrophy.
We focus on three "departments" – 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!
FSHD University – Resilience and FSHD
Zoom Web Conference1:00 PM ET | noon CT | 11:00 AM MT | 10:00 AM PT Kent Drescher, PhD Dealing with life’s slings and arrows alongside FSHD may feel like a lot,... Read More »
FSHD University: Exercise and Nutritional Interventions for the Treatment of FSHD
1:00 PM ET | 12:00 PM CT | 11:00 AM MT | 10:00 AM PT Mark Tarnopolsky, MD PhD Join us for a talk by Mark Tarnopolsky, MD PhD, Professor... Read More »
FSHD University: Bowel and urinary issues in FSHD
1:00 PM ET | 12:00 PM CT | 11:00 AM MT | 10:00 AM PT Join Drs. Michael Cole, Kathy Mathews, Christopher Cooper, and Eyad Hanna, of the University of... Read More »
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.
FSHD University video playlist
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FSHD U: True Cost of FSHD Study
The FSHD Society is conducting a new survey-based study called “The True Cost of FSHD” and is putting out a call to the FSHD community to participate.
www.FSHDSociety.org/true-cost
This is one of the most important and urgent surveys we have ever done. It is the first of its kind in the United States. Its purpose is to learn about the “hidden” costs to patients with FSHD and their family members. The results will influence FDA, drug companies, policy makers, and insurance companies.
Watch to learn how you can participate in this history-making study, then visit www.FSHDSociety.org/true-cost to sign up to participate. (*note: study enrollment concludes in July and the survey will be deployed in August.) -
TestFSHD the FSHD Society's sponsored genetic testing program
Access to genetic testing for FSHD has long been a problem in our field. Many doctors find it challenging to order the test because it is complicated and offered by only a few laboratories. Patients and families face obstacles in finding genetic counseling and getting insurance coverage. Genetic diagnosis is often required to participate in research studies and clinical trials. To improve access, the FSHD Society has launched its TestFSHD program to provide genetic testing for free to qualified patients in the U.S. In this webinar, we will explain why this program is important, who should consider getting tested, and how to participate. For more information, visit fshdsociety.org/testfshd -
MOVE and MOVE PLUS FSH muscular dystrophy natural history studies
From the FSHD University webinar series on May 19, 2022. Join Drs. Johanna Hamel, Kate Eichinger, and Natalie Katz to learn about the largest natural history ever done for FSH muscular dystrophy. People of all ages can participate, and children and teenagers are especially needed. Find out why this study is so important and why you and your affected family members’ involvement will have a huge impact on clinical trials and treatments for FSHD. Visit fshdsociety.org for more information.
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.