New York City Chapter

Thank you for visiting the New York City Chapter of the FSHD Society which officially launched in May 2019. We are here to build a local community of patients, family and friends, and help them connect and advocate for themselves and each other. Our hope for the future is to find a cure – Until then, we hope to bring a greater awareness to the community, and to help improve the quality of life of all those affected.

Join Us For the New York Family Day Conference

This is for our first-ever New York City FSHD Family Day Conference to meet top researchers, clinicians, fellow patients, and family members. You’ll hear about ongoing clinical trials and connect with the outstanding team at Columbia University Medical Center. Speakers include Michio Hirano, MD, co-director of the CUMC Muscular Dystrophy Association clinic, and director of the H. Houston Merritt Center for Muscular Dystrophy and Related Diseases; and Matthew Harms, MD, associate professor of neurology, and Fondre Goulbourne, DPT, physical therapist. Please visit the event page for more details!

To contact us directly, please email:

Visit the FSHD Society Events calendar to search for upcoming events in your area!

Don’t forget to follow us on FACEBOOK!

Please join us! Simply fill out the form below to become a member of the NYC chapter: