On the second and fourth Tuesday of every month, listen for a new episode of FSHD Straight Talk with Tim Hollenback! These episodes highlight members of the FSHD Community who are living rich, full lives and diving into their experiences with FSHD. You can find new episodes on YouTube and Facebook. You can also listen... Read More »

Multi-Chapter Virtual Meeting Tuesday, February 25, 2025 from 7:00 pm - 8:00 pm ET Zoom - RSVP to get the link This is a great opportunity to connect, share experiences, and stay informed on the latest news, research, and resources from the FSHD community. Hosted by the New England Chapter, this meeting we will be... Read More »

8:00 – 9:00 PM ET | 7-8pm CT | 6-7pm MT | 5-6pm PT 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 care partners (the term we... Read More »

19:00 CET | 18:00 GMT | 1:00 p.m. ET | 12:00 p.m. CT | 11:00 a.m. MT | 10:00 a.m. PT Anesthesia During Surgery for People with FSHD With Bruna M. Castro de Oliveira, MD. With apologies, this meeting has been rescheduled to Wednesday, February 26. It will be recorded and posted on our YouTube... 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 In this “Feeling Fit” session, Frank Hanley will present an exercise session for the shoulders, neck and the face. He will demonstrate some eye exercises too. “I get... Read More »

Western PA Chapter Virtual Meeting - BetterLife Demo Thursday, February 27, 2025 from 6:00pm - 7:00pm ET Via Zoom (Link will be sent upon receipt of RSVP) During this meeting we will be joined by Kayleigh Worek, BetterLife Program Manager, who will be giving an in-depth demo of the BetterLife platform. RSVP: https://go.fshdsociety.org/l/701273/2021-04-30/241nsl