Young Adults Monthly Meeting 8:00 pm ET | 7:00 pm CT | 6:00 pm MT | 5:00 pm PT Our guest this month is Mark Tarnopolsky, MD PhD, professor of pediatrics and medicine and director of the Neuromuscular and Neurometabolic Clinic at McMaster University Medical Center in Hamilton, Ontario, Canada. Dr. Tarnopolsky is also CEO... Read More »

Parents' Roundtable 8:00 PM ET | 7:00 PM CT | 6:00 PM MT | 5:00 PM PT Heloise Hoffmann Heloise Hoffmann, now a student at Stanford University, explains the science of FSHD to your kids (and you) in easy-to-understand terms. She'll answer your questions and discuss the new treatments that are being developed, including some... Read More »

Please join our local FSHD Community for a virtual meeting by zoom on Wednesday, January 22nd, at 6pm ET! Let's catch up with one another and make plans for the New Year! Please CLICK HERE to RSVP and receive the Zoom link for the meeting. Hope to "see" you there! Warmly, David Rubin, NYC/NJ -... Read More »

Feeling Fit with FSHD 18:00 PM CET | 17:00 PM UK | 12:00 PM Noon ET | 11:00 AM CT | 10:00 AM MT | 9:00 AM PT We are thrilled to welcome back Lonwabo Nene, a South African living with FSHD who previously led a great session on exercises that have made a difference to... Read More »

Pacific Northwest Chapter New Year Meeting DATE: Saturday, January 25, 2025 TIME: 12:00 to 2:00pm PT WHERE: Both in-person at the Sellwood-Moreland Library Community Room (7860 SE 13th Ave, Portland, OR) and virtual via Zoom. Please RSVP for the Zoom link. DETAILS: Trish Kean has been a licensed massage therapist since 1998 and has had... Read More »