Early-Onset FSHD International Chapter
The Early-Onset FSHD Chapter is led by parents who know all too well the challenges of parenting a child with FSH Muscular Dystrophy. This group was formed by parents, for parents and families, to offer support, compassion and guidance. Our aim is to connect families, deepen community, and support FSHD families wherever they may be.
The FSHD Society does not offer medical advice. The information shared on this website and through this group is not intended to be a substitute for professional medical advice, diagnosis, or treatment. We strongly recommend that your care and treatment decisions be made in consultation with your healthcare professional team.
To contact us directly, please email: EarlyOnsetChapter@FSHDSociety.org
To ensure you never miss important information about early-onset FSHD or the work of the chapter, simply fill out the form in the sidebar to become a member of this group.
Upcoming Events › All Chapters
4:00 PM ET | 3:00 PM CT | 2:00 PM MT | 1:00 PM PT The team from Fulcrum Therapeutics will be sharing 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 will be publicly presented for the first time earlier on June 24 at the FSHD Society's International Research Congress. This webinar will…Find out more »
9:00 PM ET | 8:00 PM CT | 7:00 PM MT | 6:00 PM PT This month's radio show features Lexi Pappas and Heloise Hoffmann, two of the youth advocates who are leading our new group of GenZers (and GenZs at heart). They will be discussing the mission of this group and where you can find and engage with them. Join host Tim Hollenback on YouTube on the 2nd Tuesday of every month. Call Tim at 414-375-2561 to share your thoughts,…Find out more »
9:00 PM ET | 8:00 PM CT | 7:00 PM MT | 6:00 PM PT Join host Tim Hollenback on YouTube on the 2nd Tuesday of every month. Call Tim at 414-375-2561 to share your thoughts, or post questions and comments in the YouTube comments section. You can also watch the recording on Facebook or access the podcast on most any streaming channel. Mark your calendar. Invite your friends to a listening party and chat with fellow YouTube viewers in the…Find out more »