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!
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 › All Chapters
4:00 PM ET | 3:00 PM CT | 2:00 PM MT | 1:00 PM PT The team from Fulcrum Therapeutics will be sharing the data from its Phase 2b clinical trial of Losmapimod, a treatment for FSH muscular dystrophy that is intended to stop the expression of the DUX4 gene and slow the progression of symptoms. The data will be publicly presented for the first time earlier on June 24 at the FSHD Society's International Research Congress. This webinar will…Find out more »
Tuesday, June 29th, 6pm ET | 5pm CT | 4pm MT | 3pm PT Zoom: https://us02web.zoom.us/j/83158085309?pwd=dExxamhESnNzc29qR3RyT3JELzNkZz09 Please join us in celebrating the launch of the Virginia Chapter! We are thrilled to see this new chapter take shape. This effort is being led by two amazing volunteer leaders: Jodie Howell is a certified clinical research nurse at VCU – many of you may know her already! She works with many FSHD folks, and is excited to take on this role to…Find out more »
9:00 PM ET | 8:00 PM CT | 7:00 PM MT | 6:00 PM PT This month's radio show features Lexi Pappas and Heloise Hoffmann, two of the youth advocates who are leading our new group of GenZers (and GenZs at heart). They will be discussing the mission of this group and where you can find and engage with them. Join host Tim Hollenback on YouTube on the 2nd Tuesday of every month. Call Tim at 414-375-2561 to share your thoughts,…Find out more »