Welcome to the Mid-Atlantic Chapter!
Thank you for visiting the Mid-Atlantic Chapter of the FSHD Society which officially launched in 2018. 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.
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2021 Virtual Mid-Atlantic Walk & Roll a Tremendous Success!
On Saturday, September 18, walkers and rollers stepped out to say "FSHD Ends with Me!" at the annual Mid-Atlantic Walk & Roll. Our local event raised over $14,000 towards the campaign total, through participants and teams from across the state.
Stay tuned as we begin the planning for our 2022 Mid-Atlantic Walk & Roll to Cure FSHD!
Mid-Atlantic Pickin' for a Cure benefit concert - returning in 2021!
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To contact us directly, please email: MidAtlanticChapter@fshdsociety.org
Don’t forget to follow us on FACEBOOK
Would you like to get involved? Simply fill out the form in the sidebar.
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 »
Sharegiver Hour
8:00 - 9:00 PM ET | 7-8pm CT | 6-7pm MT | 5-6pm PT This monthly meeting is for those of you who are providing care to loved ones with... 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 »
Ann Kolakowski
Interim Chapter Director
Ann is the wife of FSHD Society Board Member Frank Kolakowski, who is affected with the disease and has many other family members also impacted by it. Ann and Frank are excited to be involved with the Society at this time, with treatments and a cure within sight.
In her role as interim Chapter Director, Ann looks forward to connecting other patients, caregivers, researchers and healthcare providers in the Mid-Atlantic region to one another and the Society. Please be in touch to learn more about how you can play a part in our chapter!
Ann works as the senior director of planned gifts for the Humane Society of the United States. The Kolakowskis live in Brookeville, MD, and have two grown 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.
