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 »
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 »
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 »
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
8:00pm ET | 7:00pm CT | 6:00pm MT | 5:00pm PT North Texas Virtual Chapter Meeting, 7:00pm-8:00pm CT Please join us on the first Tuesday of every month for a virtual chapter meeting. This will be our time to come together – where Connections, Hope, Healing, and Awareness happen on a consistent basis! Hope to... Read More »
First Wednesday of every month 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT This month, two of our members will share their experiences with hiring personal care attendants and researching potential help with the VA. Please come and join us as we learn more about these two very... Read More »
Alberta Chapter In-Person Meeting Thursday, March 6, 2025 from 5:30pm - 8:30pm MT National Westhills - 180 Stewart Green SW, Calgary, AB We are gathering our members for a fun and family-friendly evening. Stop by after work, have a drink, grab a meal, and catch up with your FSHD community! We will also have a... Read More »
4:00 pm ET | 3:00 pm CT | 2:00 pm MT | 1:00 pm PT We are planning a special Wellness Hour event this month featuring art from our community members. We have 12 presenters and 62 examples of creativity/art to share with the community. We are starting one hour earlier than usual to make... Read More »
7:00 p.m. ET | 6:00 p.m. CT | 5:00 p.m. MT | 4:00 p.m. PT We were so pleased the several teenagers with FSHD came to last month's teen talk. Meeting another person with FSHD is life-changing. Suddenly, you are not alone. We'd like to devote this month's meeting to teens again. If you are... Read More »
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 »
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 Part two of this workshop, Frank Hanley will review exercises presented in Part 1 (presented February 27), and provide additional exercises for the shoulders, neck, face and... Read More »
Young Adults Monthly Meeting 8:00 pm ET | 7:00 pm CT | 6:00 pm MT | 5:00 pm PT This is a reschedule of what had been planned for January. 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... Read More »
Parents' Roundtable 8:00 PM ET | 7:00 PM CT | 6:00 PM MT | 5:00 PM PT Daniel Hinds, MD This month, we'll be joined by Daniel Hinds, MD, a Clinical Assistant Professor of Pediatrics, Division of Pulmonary Medicine at the University of Iowa. Dr. Hinds is the Fellowship Director and Director of the Rare... Read More »
Ontario Chapter - Virtual Meeting Tuesday March 18, 2025 at 7:00 PM ET Via Zoom - RSVP to get the link. We will discuss our first Ontario FSHD Conference in May that we hope everyone will attend. Also time to ask questions and share ideas. RSVP: https://go.fshdsociety.org/l/701273/2020-05-15/j1m8k
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 Exercise and Physical Therapy for FSHD, with Ulrike Uta, MSc, MCSP. Physiotherapist Ulrike Uta, of the Muscular Dystrophy Support Centre in Coventry, UK, has extensive experience helping individuals with FSHD. She notes that muscle... Read More »
7:00pm ET | 6:00pm CT | 5:00pm MT | 4:00pm PT Dear friends, Welcome to the "Third Thursday" meetings of the North Carolina Chapter! Whether or not you've attended our group's events before, we hope you will join us for this casual, conversational monthly meeting. We have no specific agenda or topic, but we are... Read More »
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 »
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 »
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 Today, we welcome Lonwabo Nene, who has explored the potential of exercises to improve strength and function in managing his FSHD symptoms. He will share a series of exercises that he has... Read More »
8:00pm ET | 7:00pm CT | 6:00pm MT | 5:00pm PT North Texas Virtual Chapter Meeting, 7:00pm-8:00pm CT Please join us on the first Tuesday of every month for a virtual chapter meeting. This will be our time to come together – where Connections, Hope, Healing, and Awareness happen on a consistent basis! Hope to... Read More »
First Wednesday of every month 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT We will open 30 minutes earlier than the official start time, for an open forum to chat, get to know each other better, share amongst the great collective of women who participate. This is our... Read More »
NYC/NJ-Area In-Person Chapter Meeting Saturday, April 5, 2025 from 10:00AM - 12:00PM ET Weehawken, NJ - RSVP for the address Opportunity to connect in person to share thoughts, exchange ideas, and get informed on the latest updates from the FSHD Society and enjoy a spectacular view of the NYC skyline. Light breakfast will be served.... Read More »
