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!
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!
Our 2023 annual Virginia Walk & Roll to Cure FSHD was an amazing success this year! Thank you to everyone who participated and helped raise awareness and funds towards reaching our goal of a cure by 2025. Fundraising will continue through the end of the year.
Learn more about the 2023 Walk & Roll to Cure FSHD HERE!
Stay tuned as we begin planning for our 2024 Walk & Roll to Cure FSHD. If you would like to volunteer to support the 2024 Walk & Roll, please contact your local chapter director or walk leader.
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.