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!
Wellness Hour (Virtual Meeting) – Reducing stress in our lives
5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT Join us this month to learn about stress reduction through Mindfulness. Dr. Jennifer Egert will... Read More »
FSHD Radio with Guest, Sam Ray
Facebook LiveTuesday, December 14 9:00 PM ET | 8:00 PM CT | 7:00 PM MT | 6:00 PM PT This month’s guests will be Sam Ray, a 15-year-old, in Tucson, AZ,... Read More »
FSHD University: Orthotics for knee hyperextension
1:00 PM ET | 12:00 PM CT | 11:00 AM MT | 10:00 AM PT Bob Meier, CO Bob Meier, certified orthotist, is back to present on a topic that... Read More »
FSHD University video playlist
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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. -
The Mattering Effect: How Feeling Valued and Adding Value Shape our Lives
Presented by Isaac and Ora Prilleltensky. Mattering consists of feeling valued and adding value, to ourselves and others. By feeling valued we mean being appreciated, respected, and recognized. By adding value we mean making a contribution and making a difference in the world. We feel valued by, and add value to, self, relationships, work, and community. Ableism, racism, discrimination, and oppression work against feeling valued and opportunities to add value.
The mattering effect refers to the positive or negative consequences of feeling like we matter or not. Feeling valued is a precondition for personal health and well-being. Adding value, in turn, is a prerequisite for a meaningful life. The negative effects of not mattering, however, can be devastating. Ostracism, exclusion, and rejection are not only painful, but they can also lead to violence and depression. Feeling like we matter is one of the most defining features of humanity. When that feeling is present, we thrive. When that need is thwarted, we develop one of two types of problems: devaluation or overvaluation. We feel either invisible or invincible; ignored or grandiose. The presenters will discuss the implications of mattering for living with a disability.
Isaac Prilleltensky, former Dean of the School of Education and Human Development, holds the Erwin and Barbara Mautner Endowed Chair in Community Well-Being at the University of Miami. Ora Prilleltensky, who has FSHD, is a retired professor from the University of Miami, where she directed a major in Human and Social Development. Their latest book, from which this text is excerpted, is How People Matter: Why it Affects Health, Happiness, Love, Work, and Society (Cambridge University Press, 2021).
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.