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, Kathy Senecal is providing a session on yoga breathing techniques. She will be targeting diaphragmatic, energy, sleep, and stress- reducing techniques. Include a photo of her (in Media Library) is possible. We will... Read More »
British Columbia Chapter - Virtual Meeting Wednesday, April 2nd, 2025 - 6:00 PM Via Zoom - link sent upon receipt of RSVP Check in with fellow BC Chapter members to review our walk and roll program and discuss our upcoming FSHD 360 in June.
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 »
Dakotas Chapter In-Person Meeting Sunday April 6, 2025 at 2:00pm CT Location TBD Join our Spring chapter meeting for the opportunity to reconnect with each other and share our experiences. More information coming soon. RSVP: https://go.fshdsociety.org/l/701273/2023-05-09/439tq1
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 This month, Kathy Senecal is providing a session on yoga breathing techniques. She will be targeting diaphragmatic, energy, sleep, and stress- reducing techniques. Include a photo of her... Read More »
Chicagoland Chapter Monthly Virtual Meeting 6:10 - 7:10 PM CT, every second Thursday of the month Zoom meeting - please RSVP for the link This meeting is a chance for our Chicago Chapter to engage with our FSHD community by building stronger connections, sharing resources, and providing support. Please join us for engaging conversation and... Read More »
5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT This month's guest will focus on hands: tips on how to strengthen and the role of occupational therapy. Our guest is Debbie Olerud-Curley COTA/L, a licensed occupational therapy assistant. Debbie graduated from North Dakota State School of Science in 1988.... Read More »
NEW SCHEDULE: Second Monday of every other month. Next meeting is in May 7:00 p.m. ET | 6:00 p.m. CT | 5:00 p.m. MT | 4:00 p.m. PT The Everything Early Onset group hopes to engage adults of all ages living with early-onset FSHD and build a community where we can share our experiences and... Read More »
Parents' Roundtable 8:00 PM ET | 7:00 PM CT | 6:00 PM MT | 5:00 PM PT Brun~Brianna Brianna Brun, MD, is a neuromuscular specialist at the University of Rochester. She completed her undergraduate studies at Iowa State University. She then obtained her MD at the University of Iowa Carver College of Medicine during which... 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 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 »
North Carolina Third Thursday Chapter Meeting 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... Read More »
Arizona Chapter Community Lunch Saturday, April 19th, 2025 | 12:00-2:00pm Brother John's Beer Bourbon & BBQ - 1801 N Stone Ave, Tucson Please RSVP to Ray at rayjordanau@gmail.com or call 520-461-8125 so we can keep the venue updated with the number of attendees.
Young Adults Monthly Meeting 8:00 pm ET | 7:00 pm CT | 6:00 pm MT | 5:00 pm PT FSHD Young Adults is a social and support group focused on encouraging and empowering young adults impacted by FSHD. We created this space specifically for younger FSHDers to connect, collaborate, and provide networking opportunities. Whether you’re... Read More »
Western PA Virtual Chapter Meeting Monday, April 21, 2025 from 7:00pm - 8:00pm ET Via Zoom During this meeting we will be joined by Anna Gilmore, Sr. Director of Education & Advocacy, who will provide a tour of the new Care Connector tool and discuss with us its features and future developments. Care Connector is... 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 »
Virginia Chapter Monthly Virtual Meeting 6:00pm - 7:00pm ET, every 4th Tuesday of the month Virtual via Zoom - RSVP for the link DETAILS: Join us for our monthly meeting for casual conversations!
St. Louis Chapter Virtual Meeting Tuesday, April 22, 2025 at 6:00 pm Virtual via Zoom (link will be sent upon receipt of RSVP) DETAILS: Please join us for conversation and support. RSVP: https://go.fshdsociety.org/l/701273/2023-03-01/42xfv2
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 For people living with FSHD who are interested in exercise and fitness, we meet on the 2nd and 4th Thursday of every month at 12:00 pm (noon) U.S.... Read More »
Michigan Chapter Meeting DATE/TIME: Monday, April 28th, 2024 - 7:00PM ET Virtually by Zoom. Please RSVP to receive the link. Please join us for conversation and support. RSVP: https://go.fshdsociety.org/l/701273/2023-04-09/433mcc
North Texas Virtual Chapter Meeting We meet virtually via Zoom on the last Wednesday of each month, from 7:00pm - 8:00pm CT RSVP: https://go.fshdsociety.org/l/701273/2022-11-04/3sbgxx
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 »
Utah Chapter Virtual Meeting Tuesday, April 29, 2025, 7:00pm-8:00pm MT Virtual via Zoom - RSVP for the link Please join us for conversation and support. RSVP: https://go.fshdsociety.org/l/701273/2023-06-22/43jsb5
Ontario FSHD 360 May 3 from 9:00 AM to 4:00 PM Co-hosted by FSHD Canada Foundation and FSHD Society Burnhamthorpe Community Centre 1500 Gulleden Dr. Mississauga, ON L4X 2T7 CANADA FSHD research and drug development is in a new era. Do you know what’s happening and how this might impact your life? Here’s your chance... Read More »
