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!
Jul
27
Sharegiver Hour – The mental health toll of the pandemic
8:00 - 9:00 PM ET | 7-8pm CT | 6-7pm MT | 5-6pm PT 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. This month, we have a recommended reading, this NPR story, "Unpaid Caregivers Were Already Struggling. It's Only Gotten Worse During The Pandemic." A recent study found that family caregivers…
Find out more »Aug
9
Wellness Hour (Virtual Meeting)
This is our monthly Zoom meeting on Wellness, held on the second Monday of each month at 5:00-6:00 pm ET (if Monday is a national holiday, the meeting will be held on Tuesday). The Wellness Hour is open to everyone in the FSHD community. This is your time to enjoy the company of fellow FSHers, share challenges, talk about what works for you, and feel validated and supported in whatever you may be going through. If you are interested, please…
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FSHD Society Radio on our Early-Onset chapter
9:00 PM ET | 8:00 PM CT | 7:00 PM MT | 6:00 PM PT This month's guests are Ally Roets and her son, Sam Ellis. Together with Kristin Zwickau, they are co-leading our early-onset FSHD chapter for families that have members who developed symptoms of FSHD in early childhood. This form of FSHD brings unique challenges. We seek to connect early-onset families around the world through this chapter so that they can share their knowledge and advocate for research…
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FSHD University video playlist
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Dynamic sitting - exercising in a seated position
We’ve all heard how important a well-tailored exercise program is for people with FSH muscular dystrophy. This is easier said than done, especially if you have difficulty standing up or worry about falling during exercise. In today’s webinar, Nikia Stinson, DPT, discusses upper body weakness and pain that are frequently experienced by people with FSHD and describes exercises that can be done from a seated position to help address these issues. Dr. Stinson is a physical therapist and lead clinical evaluator for ongoing clinical research at the Kennedy Krieger Institute's Center for Genetic Muscle Disorders. -
Webinar Clinical Trials 101 with Dr Tahseen Mozaffar
From the FSHD University webinar series. With Tahseen Mozaffar, MD, chair of neurology at the University of California Irvine. Learn about clinical trials, the scientific process by which researchers determine whether a new therapy is safe, works biologically as expected, and, most importantly, can improve outcomes for patients. In addition, trial sponsors need to navigate a complex web of regulatory rules set by the FDA in the U.S. (and European Medicines Agency, or EMA, in Europe). There’s a lot to unpack here, especially when it comes to a complex condition like FSH muscular dystrophy. We will discuss the real-life, ongoing ReDUX4 trial, the first trial of a DUX4-reducing therapeutic, which is expected to announce results by the end of June 2021. This webinar will help you understand the trial results, whether positive or negative, and what they mean. -
MOVE Study for FSH muscular dystrophy
From the FSHD University webinar series, June 3, 2021. Presented by Johanna Hamel, MD, and Kate Eichinger, DPT, from the University of Rochester Medical School.
When doctors diagnose individuals with a progressive condition like FSH muscular dystrophy (FSHD), they’re often asked, What does the future look like? Will I need to use an orthotic brace? How long do I have before I need to use a walker or a wheelchair? What about respiratory support? While medical professionals can provide some general guidance, the truth is that we need more research to better predict how an individual might progress. That is the primary goal of a new study, Motor Outcomes to Validate Evaluations in FSHD (MOVE FSHD). Its aims are to create a standard, clinic-based protocol – techniques to assess patients’ health and muscle strength and function in the doctor’s office – which will help to improve care and hasten the development of treatments for FSHD. The MOVE study is now enrolling volunteers at the 12 sites of the FSHD Clinical Trial Research Network. Learn more about why this study is important and what’s involved for volunteers.
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.