Now available. Read our 2025 Impact Report
Saturday, August 29, 2026 1pm ET / 12pm CT / 11am MT / 10am PT Join us for our next Weekend Wellness Hour, an open forum gathering designed for members of the international FSHD community who are available on the last Saturday of most months. This welcoming space brings together individuals at every stage of […]
Sept 2, 2026 | 4:30-6:00pm ET Aging in the Right Place Sometimes what we want and what's best for us don't always match. That case is usually true when it comes to "aging in place". Most of us would like to stay in our own current home. However, choosing a place that best supports our […]
Sept 10, 2026 | 7:00-8:00pm ET Chair Yoga This class, taught by Donna Russo, BA in Dance from Mercyhurst University and certified in Chair Yoga, concentrates on breathing techniques and meditation to help relieve stress. Donna is familiar with adapting Yoga. Yoga is for everyone: it reduces stress, increases flexibility, relaxes your breathing, creates body […]
Sept 14, 2026 | 4:30-6:00pm ET Exploring the Possibilities for Patient Led Research on FSHD Do you have health concerns related to FSHD that no one in the medical community is addressing? Join us to explore the emerging field of Patient Led Research and how we could apply it to FSHD. Register Now Together, we […]
Sept 26, 2026 | 1:00-2:00pm ET Join us for our next Weekend Wellness Hour, an open forum gathering designed for members of the international FSHD community who are available on the last Saturday of most months. This welcoming space brings together individuals at every stage of the FSHD journey, from newly diagnosed to long-experienced community […]
Sept 29, 2026 This meeting is for those 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. Register Now
8:00 pm ET | 7:00 pm CT | 6:00 pm MT | 5:00 pm PT Join us to speak with a physical therapist whose patient has benefited from a PT program. Register NEW DATE AND TIME: Third Monday of every OTHER month. We will meet in February, April, June, August, October, December in 2026. FSHD […]
Parents' Roundtable 8:00 PM ET | 7:00 PM CT | 6:00 PM MT | 5:00 PM PT New Schedule: The Parents' Roundtable will meet quarterly starting in 2026. We will meet in January, April, July, and October of 2026. Join us for our Parents’ Roundtable on the 3rd Tuesday, where parents meet to exchange ideas, […]
8:00 pm ET | 7:00 pm CT | 6:00 pm MT | 5:00 pm PT Join us to speak with a physical therapist whose patient has benefited from a PT program. Register NEW DATE AND TIME: Third Monday of every OTHER month. We will meet in February, April, June, August, October, December in 2026. FSHD […]
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