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!
Past Events › FSHD Radio
This month, we'll be discussing the recent Fulcrum clinical trial results with the FSHD Society's June Kinoshita, director of research and patient engagement. For many of us, this news is top of mind, so we want to provide the space to discuss the study and share how we are feeling and processing the information. Our monthly Zoom meeting on Wellness is held on the second Monday of each month at 5:00-6:00 pm ET (if Monday is a national holiday, the…Find out more »
9:00 PM ET | 8:00 PM CT | 7:00 PM MT | 6:00 PM PT This month's radio show guest is Heloise Hoffmann, who is not only the director of our Southwest Florida chapter and author of a new research paper on sleep and FSHD, but she is also a member of the team of young leaders who have recently formed "GenZ of FSHD," a group of youth activists. They want to let their peers know that no one needs…Find out more »
1:00 PM ET | 12:00 PM CT | 11:00 AM MT | 10:00 AM PT 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, Dr. Nikia Stinson discusses upper body weakness and pain that are frequently experienced by people with FSHD and describes exercises that can be done from a seated…Find out more »
FSHD University video playlist
Best practices in medical care, physical therapy, and exercise for FSHD can improve health and overall function in many individuals.
Disability and unpredictability take a toll on mental health and well-being. Learn how to manage stress and anxiety and find happiness.
Understanding research can guide best practices in care and empower you to engage in impactful ways with research and drug development.
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.