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!

Sign up here to receive monthly meeting reminders

Thank you for supporting the Walk & Roll in 2022!

A huge THANK YOU to everyone who walked, rolled, donated, and showed up on Saturday, Sept. 24th at the Norfolk Zoo! We are thrilled to announce that we exceeded our expectations by raising over $12,000!!! We thank you for your support.

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

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FSHD Radio: Hot off the Press

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Thursday, March 23rd  On the 4th Thursday of every month, join us for FSHD Radio: Hot off the Press. Every month we will bring you a short-form show that will bring... Read More »

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Jodie Howell

Jodie Howell

Gary Lauck

Gary Lauck

Chapter co-Directors

Jodie Howell has been a certificated clinical research nurse for over 10 years working in investigational  drug studies. Prior to research I work as a endoscopic and floor nurse with Sentara’s Hospital for several years. I believe in empowering patients to be their best advocate.

When not working I have two teenage sons and a dog that’s an German Shorthair Pointer (Fenway) who keep me young.

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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 strong, 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

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