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 Madison Cafe & Grill - 4 Pembroke Place 101, Edgewater, NJ 07020 Join us for breakfast and an opportunity to connect in person to share thoughts, exchange ideas, and get informed on the latest updates from the FSHD Society. RSVP: https://go.fshdsociety.org/l/701273/2023-01-13/42py3c
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 is stepping into the legendary Rabi Tawil's role. She'll be talking about the MOVE Pediatric study, the importance of routine clinical appointments for children,... 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 Physiotherapy and exercises with FSHD – Optimising mobility and function Physiotherapist Ulrike Uta, of the Muscular Dystrophy Support Centre in Coventry, UK, has extensive experience helping individuals with FSHD. She notes that muscle weakness... 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 We'll be joined by one of our FSHD rock stars, Heloise Hoffmann. Diagnosed at 13, Heloise went through difficult teen years and triumphed as she accepted and even embraced her diagnosis. Now a student at Stanford,... 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 »
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
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!
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 welcome back Donna Russo to lead a session of chair yoga. She will show us gentle stretches and exercises from yoga that are adapted for people in... Read More »
Colorado Chapter In-Person Meeting Saturday, April 26th, 2025 from 9:00 - 11:00 am Bean Fosters - Golden: 720 Golden Ridge Rd, D Golden, Colorado 80401 Informal gathering to catch up on the latest news and share our FSHD journey with friends over coffee. RSVP: https://go.fshdsociety.org/l/701273/2020-05-15/j1m9k
Greater Philadelphia Chapter In-Person Meeting Saturday, April 26, 2025 from 1:00 - 4:00pm ET Wissahickon Valley Public Library Community Room - 650 Skippack Pike, Blue Bell PA 19422 ***Option to attend virtually via Zoom (RSVP to receive the link) We will gather to catch up, socialize, and discuss BetterLife - a new platform dedicated to... 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
New England Chapter Virtual Meeting Wednesday, April 30, 2025, 7:00 pm - 8:00 pm ET Zoom - RSVP to get the link We’re excited to invite you to our New England Chapter virtual meeting for April. During this meeting, we will discuss: 1. Site proposals for the annual New England Chapter lunch; 2. Program updates... Read More »
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 »
