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.
FSHD Parents Hotline - 781-301-6060 x3000
Whether your child is newly diagnosed, or you’ve been living with FSHD for a while, sometimes you just want to speak with someone who “gets it”. If you are facing a new milestone, have hit a critical juncture in your child’s care, or are struggling to find the information or resources you need, it can help to speak with another parent who has been there. That’s what the parent hotline is all about.
While we don’t give any medical advice, our group of volunteer parents can share their experience and listen, having walked a similar path.
You can call the hotline, leave a message, and one of our parent volunteers will return your call.
If you are interested in volunteering in this way, please reach out to Ally Roets, Early-onset Chapter Director, at EarlyOnsetChapter@FSHDSociety.org or by leaving a message on the hotline at 781-301-6060 x3000
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.