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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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 in Alpha Ridge Park in Marriottsville, MD! We are thrilled to announce that we raised over $35,000!!! We thank you for your support.

Want to know more about the Walk & Roll? Learn More

 

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

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FSHD Radio: Hot off the Press

Facebook and YouTube

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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Ann Kolakowski

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.

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