FSHD University: The Job Talk w/ Lynn Stevens May 20, 2021 Many people with FSHD have given up when it comes to work. They often believe they are unemployable and should seek disability benefits instead. Lynn Stevens, Director of Workforce Development at Goodwill Industries of North Louisiana, has a different message. Tune in to this webinar to learn about what it takes to have a successful career while living with FSHD and the resources that are available. Click here to…

Feeling Fit With FSHD: Postural Changes February 9, 2023 Join physiotherapist Ulrike Uta of the Muscular Dystrophy Support Centre (MD Support Centre) in Coventry, UK, for today’s session. Postural changes in FSHD are expected and are caused by muscle weakness and compensatory mechanisms of our body to stay up against gravity and to complete tasks. These postural changes can lead to soft tissue tightness or shortness, which then cause additional problems, such as discomfort or pain, cramps, headaches, shoulder, neck…

Wellness Hour - Towards Hope February 13, 2023 This month we will be joined by crisis counselors Kylee Helmke and Andrea Morales to discuss mental health issues that affect the FSHD community. Depression is not uncommon, and too many families have been devastated by suicide. This is a safe, confidential space to share your experiences. We will discuss what we can do as a community and individuals to help loved ones in crisis. What are warning signs to be aware…

FSHD University: The FORTITUDE Trial February 14, 2023 Avidity Biosciences has announced its plans to launch FORTITUDE, a Phase 1 / 2 clinical trial in FSHD of the novel compound AOC 1020. This will be the first human trial of an FSHD disease-modifying drug based on an siRNA targeting DUX4 mRNA. We'll learn more about how the drug works, the design of the trial, and where and when patients can expect to enroll in it. To sign up, click here.

Early-Onset Parent Roundtable February 21, 2023 Join us for our monthly Early-Onset Parent Roundtable on the 3rd Tuesday of each month, where parents meet to exchange ideas, offer support, and gain insight to keep our children with FSHD as healthy and mobile as possible. We will have plenty of time for parents to exchange ideas and ask/answer questions from other parents. We’d love your thoughts and participation. Please join us and bring your ideas, questions, answers, and tips and tricks.…

Feeling Fit with FSHD: Postural Changes, Part 2 February 23, 2023 Ulrike Uta will join us to discuss the experiences of the February 9 exercise class and answering questions. We can revisit some exercises to discuss in more detail. We all move in habitual, learned pattern.  Normally, we are not aware of our movement pattern and changing them can be challenging. Either because we can’t feel how we can activate different muscles or because muscles are too weak or inactive…

FSHD University: Dr. Rita Perlingeiro on Stem Cell Research and FSHD February 23, 2023 Our webinar speaker is Dr. Rita Perlingeiro, Associate Professor of Medicine within the Lillehei Heart Institute at the University of Minnesota. Her primary research interests include understanding the molecular mechanisms controlling lineage-specific differentiation of pluripotent stem cells, and applying this information to efficiently generate tissue-specific stem/progenitor cells endowed with in vivo regenerative potential. Her work has potential applications in muscular dystrophy research and future therapies. Dr.…