8:00 – 9:00 PM ET | 7-8pm CT | 6-7pm MT | 5-6pm PT Calling all CarePartners to join us this month! Taking a loved one to the doctor can bring its own challenges. Doctor’s offices can be surprisingly inaccessible to a person with FSHD, for example if the waiting room chairs are hard 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, one of our members, a wheelchair user, will share of her adventures and challenges during a month-long solo trip driving her van from the Upper Mid-west to Florida. This is our mutual support... Read More »
St. Louis In-Person Chapter Meeting Saturday, June 4th, 2022 11:30am Central Time BC's Kitchen in the Meadows of Lake Saint Lewis 11 Meadow Circle Drive, Lake St. Louis, MO 63367 Let’s Reconnect! Please join the FSHD Society St. Louis Chapter for lunch on Saturday, June 4th, at 11:30am at BC’s Kitchen in the Meadows of... Read More »
Lab Tour & Meeting Saturday June 11th, 2022 12:30pm - 3:00pm ET Children's Hospital of Eastern Ontario (CHEO) Ottawa, ON The Ontario Chapter of the FSHD Society invites you to a very special “field trip” event! We are very lucky to be invited to tour the lab of Dr. Hanns Lochmuller at the Children’s Hospital... Read More »
5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT This month, June Kinoshita, director of research and patient education for the FSHD Society, will answer your burning questions about FSHD...or try to. If she doesn't know, she will be mingling with the world experts later this week at the... Read More »
The FSHD Society’s annual FSHD International Research Congress is the premier global scientific conference exclusively focused on facioscapulohumeral muscular dystrophy (FSHD) research. The IRC is open to all active researchers working in FSHD and related fields. World renowned clinicians, medical researchers, pharmaceutical industry leaders and basic scientists present and discuss new developments, reinforce collaborative efforts,... Read More »
FSHD Connect is the FSHD Society's flagship educational conference. Held every two years, it is the world's biggest networking event for FSHD, bringing together hundreds of individuals and families living with FSH muscular dystrophy, clinicians, and researchers for two days of immersive learning and workshops. You'll find out about the latest research, drug development, and... Read More »
Saturday, June 18 - Special FSHD Connect edition 9:00 AM ET | 8:00 AM CT | 7:00 AM MT | 6:00 AM PT This month we are meeting live with the Early-Onset Families Unite! breakout session at the FSHD Connect conference in Orlando. Join us via Zoom with us as we discuss strategies for activating... Read More »
FSHD Society Connect Watch Party Saturday, June 18th, 2022 9:00am - 3:00pm Pacific Time Boeing Museum of Flight 9094 E. Marginal Way S Seattle, WA South View Lounge Join us for the afternoon sessions of the FSHD Connect Conference, which will be live-streamed from 10:00am to 2:00pm Pacific Time. Lunch will be provided. All attendees... Read More »
Colorado Chapter "Watch Party" Saturday, June 18th, 2022 10am - 2pm MT Southglenn Library - Meeting Rooms A&B 6972 S Vine St, Centennial, CO 80122 As you may have heard, the FSHD Society is bringing FSHD Stakeholders from around the world together for 6 days in June to chart a strategy to bring effective treatments... Read More »
Every June 20th, people around the world join in activities to raise awareness for Facioscapulohumeral muscular dystrophy (FSHD) through World FSHD Day. Visit our World FSHD Day page for ideas of how you can get involved by posting images and stories on your favorite social media channels. This year you can also purchase a World FSHD... Read More »
Sunday, June 26th 2pm ET Please join us for the next virtual gathering of the North Carolina Chapter! This will be an informal meeting, and everyone is welcome to share updates, ask questions, and bring your ideas. We will discuss the recent Patient Connect conference, takeaways, and lessons learned. We will also discuss the new... Read More »
8:00 – 9:00 PM ET | 7-8pm CT | 6-7pm MT | 5-6pm PT Caring for someone with a disability can feel like a 24/7 situation. Even when you are not literally assisting your loved one, you may feel you can never relax. You become hypervigilant about avoiding accidents. Everything involves planning. So as we... Read More »
Please join us for the monthly virtual meeting of the Virginia Chapter!! This is an informal, conversational meeting where we all share ideas, frustrations, and life’s little wins. We welcome all friends, old and new! Sign up at this link to receive a meeting reminder every month. At meeting time, click this link to join... Read More »
Wednesday, June 29th 6pm ET We hope you will join us for the next meeting of the Western PA Chapter! We will discuss takeaways from the recent Patient Connect conference, the status of research and clinical trials, and what we have to look forward to for the rest of the year. It is sure to... Read More »
English
Spanish
French
German
Italian
Dutch
Russian
Chinese (Simplified)
Japanese
Hindi
Hebrew
Portuguese
