Welcome to the Virgina Chapter!
Thank you for visiting the Virgina Chapter of the FSHD Society which officially launched in May 2021. We are here to build a local community of patients, family and friends, and help them connect and advocate for themselves and each other. Our hope for the future is to find a cure – Until then, we hope to bring a greater awareness to the community, and to help improve the quality of life of all those affected.
The goals of the Chapter Program here in Virginia are to:
- Increase awareness and educate families throughout Virginia.
- Help build connections among patients, care givers, health care providers and others affected by this disease.
- Harness the power of those shared connections allowing us all to gain strength, support and encouragement as we push forward in finding a cure for FSHD.
- Last but not least let’s HAVE SOME FUN while we accomplish these goals!
Join us for our monthly virtual meeting!
At 6pm ET on the 4th Tuesday evening of every month, we welcome all our friends from VA to join us online as we reconnect! This is an informal, conversational meeting where we all share ideas, frustrations, and life’s little wins. We also share updates from the field, the latest in research, and discuss what the Society is working on. Frequently we are joined by guest speakers of all varieties - and we are happy to take suggestions if there's someone you'd like to hear from! We look forward to seeing old friends, and meeting new ones.
At meeting time, click this link to join the meeting.
We hope to “see” you there!

Make plans now to Walk & Roll with us in 2022!
Our international Walk & Roll Celebration Livestream will take place on Saturday, September 17, 2022. Here in Virginia, we are making plans to build on the success of last year's walk and hope you will join us!
Want to help plan or organize the Virginia Walk & Roll to Cure FSHD? I'd love to have you! Let me know at VirginiaChapter@FSHDSociety.org
Want to know more about the Walk & Roll? Learn More
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To contact us directly, please email: VirginiaChapter@FSHDSociety.org
Please join us! Simply fill out the form in the sidebar to become a member of the Virginia chapter.
Upcoming Events
Women on Wellness – Transitions in mobility
Zoom Virtual MeetingFirst Wednesday of every month 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT Our topic this month is transitions in mobility. How do... Read More »
Wellness Hour – How do I talk to my family about FSHD?
Zoom Virtual Meeting5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT FSHD is a familial condition, and yet family members can hold different attitudes about how... Read More »
FSHD Radio: Community Profiles with Dylan King
Facebook and YouTubeTuesday, July 12th 9:00 PM ET | 8:00 PM CT | 7:00 PM MT | 6:00 PM PT On the 2nd Tuesday of every month, join us for FSHD Radio:... Read More »