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.
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!
2024 Virginia Walk & Roll to Cure FSHD
Our 2024 annual Walk & Roll to Cure FSHD was an amazing success this year! Thank you to everyone who participated in helping raise awareness and funds toward reaching our goal of finding treatments and a cure for FSH Muscular Dystrophy. Fundraising will continue through the end of the year.
Learn more about the Walk & Roll to Cure FSHD here.
Stay tuned as we begin planning for our 2025 Walk & Roll to Cure FSHD!
Upcoming Events
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Mollie Garrett
Gary Lauck
Chapter co-Directors
Hello! My name is Mollie Garrett and I live in Chesapeake, Virginia. After nearly 10 years of seeing various specialists, I was finally diagnosed with FSHD in February 2024. I joined the FSHD Society immediately and began attending monthly online meetings. In April 2024, I attended a patient education day where I met others with FSHD for the first time, and I was invited to join FSHD Society advocates for our first Capitol Hill Day on May 8, 2024. Because of the FSHD Society, I not only gained a community of friends and professionals to support me and my family; I gained hope that treatment and a cure are within reach! I am passionate about helping each of us to live our best lives and to never feel alone on this journey. It’s an honor to serve as Co-Director of the FSHD Society Virginia Chapter and I look forward to getting to know you and welcoming you to our community!
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Gary Lauck was diagnosed with FSHD1 in November 2018, and through serendipity, learned about an upcoming research study at Virginia Commonwealth University looking for volunteers with his condition. He was accepted to the ReSOLVE study, and greatly appreciated the opportunity to meet and interact with the exceptional staff. In a short amount of time, he overcame the initial shock and anxiety that accompanied his diagnosis and learned a lot about the disease. “It feels great to be an active part of the solution, which is why I volunteered to help start the Virginia chapter. I can’t thank groups like the FSHD Society enough for helping people like me, and I hope to pay it forward by growing the community and outreach in our state.”
Gary grew up in a small town in West Virginia, and after serving almost 30 years as a Navy helicopter pilot, retired from the military in 2018 and resides in Virginia Beach with his wife and two children.
Stay Informed on Chapter Activities!
Join the world’s largest network of patients, families, clinicians, researchers, and friends advocating for FSH muscular dystrophy. Let us know you want to be a part of the local chapter and you'll never miss a meeting or event notice.
When you sign up you'll receive the latest word on clinical trials, information on how to live a better life, and about local events that will connect to our remarkable community. You will also have the option to join our patient contact registry.
If you want to know more about this and why it is so important, learn more HERE
Your personal information will be kept strictly confidential.
