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!
Virginia Commonwealth University is one of the newer members of the FSHD Clinical Trial Research Network, but its director Nick Johnson, MD, has been a leader in the field going back to his time leading the CTRN group at the University of Utah. He and his superb team of clinicians and researchers will answer your questions about your health, genetic counseling and testing, physical and occupational therapy, and much more. Learn about cutting-edge research at VCU as well as promising advances in FSHD therapies from many of the companies and academic investigators working in this space. Don’t miss out on the opportunity to meet patients and families throughout Virginia and beyond, and network with FSHD Society leaders and activists in our community!
The agenda will be available soon. You can attend in-person or virtually.
On Saturday, September 18, walkers and rollers across the US & Canada stepped out to say "FSHD Ends with Me!" at the annual Walk & Roll.
Stay tuned as we begin the planning for our 2022 Virginia Walk & Roll to Cure FSHD!
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.
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... Read More »