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 the FSHD360 Conference at VCU!
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.
2021 Walk & Roll a Tremendous Success!
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!
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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
FSHD University: Pregnancy and reproductive genetic counseling
1:00 PM ET | 12:00 PM CT | 11:00 AM MT | 10:00 AM PT With Sanne Vincenten, MD, and Nicol Voermans, MD PhD, of Radboud University Medical Center, and... Read More »
Virginia Monthly Meeting
Virginia VAPlease 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 »
FSHD 360 VCU
Virginia Commonwealth University Larrick Center, 900 Turpin Street, Richmond, VA10:00-3:00 pm ET 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... Read More »
Jodie Howell & 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.
Gary Lauck was diagnosed with FSHD1 in November 2018, and through serendipity, learned about an upcoming research study at VCU looking for volunteers with my condition. I applied and 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, I overcame the initial shock and anxiety that accompanied my 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, I retired from the military in 2018 and reside in Virginia Beach with my wonderful wife and our two teenage 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
Your personal information will be kept strictly confidential.
