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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Save the Date for the 2023 Walk & Roll to Cure FSHD!
Our 2023 annual Mid-Atlantic Walk & Roll to Cure FSHD was an amazing success this year! Thank you to everyone who participated and helped raise awareness and funds towards reaching our goal of a cure by 2025. Fundraising will continue through the end of the year.
Learn more about the 2023 Walk & Roll to Cure FSHD HERE!
Stay tuned as we begin planning for our 2024 Walk & Roll to Cure FSHD. If you would like to volunteer to support the 2024 Walk & Roll, please contact your local chapter director or walk leader.
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
Women on Wellness – Estrogen & FSHD
Zoom Virtual Meeting , United StatesFirst Wednesday of every month 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT Our guest this month is Loralei Thornburg, MD, professor of... Read More »
Wellness Hour – Chair dance party
Zoom Virtual Meeting , United StatesDancing with differences: A Moving Celebration of the Season 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT Join us for a joyous and... Read More »
FSHD Radio: Community Profiles
Facebook and YouTubeTuesday, December 12th On the 2nd Tuesday of every month, we will bring you a new episode of FSHD Radio: Community Profiles. This long-form show includes profiles of the FSHD... 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 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.
