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!
FSHD University: Pregnancy and reproductive genetic counseling
1:00 PM ET | 12:00 PM CT | 11:00 AM MT | 10:00 AM PT With Sanne Vincenten, MD, and Nicol Voermans, MD PhD, of Radboud University Medical Center, and... Read More »
Sharegiver Hour
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... Read More »
Wellness Hour (Virtual Meeting)
5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT Join us for our monthly Zoom meeting on Wellness, held on the second Monday of... Read More »
FSHD University video playlist
-
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). -
FSHD Sleep and pain study by Heloise Hoffmann
In this presentation, Heloise Hoffmann will share her work focusing on understanding the relationship between FSHD, sleep, and pain. Sleep is essential, but it could be affected by FSHD. To confirm this link, Heloise conducted a survey of FSHD Society members regarding self-reported sleep quality and daytime sleepiness in the largest sample surveyed to date. She will discuss her research process, findings, and implications.
Heloise is an FSHD patient who feels passionate about activating the community to join the march for a cure, and this led her to found the Southwest Florida Chapter and take part in an initiative to maximize youth involvement. She strives to get involved in science and research for FSHD. -
Fulcrum Phase 2b trial results
The team from Fulcrum Therapeutics shared the data from its Phase 2b clinical trial of Losmapimod, a treatment for FSH muscular dystrophy that is intended to stop the expression of the DUX4 gene and slow the progression of symptoms. The data was publicly presented for the first time earlier on June 24, 2021, at the FSHD Society’s International Research Congress. This webinar was the first presentation of the data to patients and families and includes Q&A 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.