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
This is our monthly Zoom meeting on Wellness, held on the second Monday of each month at 5:00-6:00 pm ET (if Monday is a national holiday, the meeting will be held on Tuesday). Last month we all enjoyed a very informative and lively discussion about travel, dealing with air lines, hotels, and damaged power wheelchairs. By popular demand, we will continue on this topic and expand it to travel for people who are still walking as well as to local…Find out more »
9:00 PM ET | 8:00 PM CT | 7:00 PM MT | 6:00 PM PT Lori Brant 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. "Our guest this month is Lori Brant, a life coach who lives with FSH muscular dystrophy.…Find out more »
8:00 - 9:00 PM ET This monthly meeting is for those of you who are providing care to loved ones with FSHD. This virtual meeting is a safe and supportive space to share your experiences, challenges, and helpful tips with other caregivers. Please respect our rules restricting this meeting to caregivers (or "sharegivers," as Isaac Prilleltensky has proposed, because providing care to loved ones is a two-way street). Because we don't want to publicly post the Zoom meeting link (to…Find out more »