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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The Mid-Atlantic Walk & Roll to Cure FSHD
Our 2020 Walk & Roll has gone VIRTUAL! Please join us, and invite your family and friends from wherever they are to join us too!
We will "see" you on Saturday, September 12, 2020 - when all of our Chapters nationwide will join together!
Click the button below to register or donate!
All of our worlds have been highly impacted by the corona virus pandemic, yet our commitment to our families remains the same. This is why we must continue to move forward!
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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
Aug
5
FSHD Society Radio
Tim Hollenback, FSHD Radio host 9:00 PM ET | 8:00 PM CT | 7:00 PM MT | 6:00 PM PT Join host Tim Hollenback on Facebook Live on the first Wednesday evening every month. During the hour-long program, you'll get to meet fascinating guests discussing a wide range of topics of interest to our community. Mark your calendar. Invite your friends to a listening party and chat with fellow Facebook listeners in the comments section. It's a great community event!
Find out more »
Webinar on scapular stabilization surgery
Dr. Anthony Romeo NOTE CHANGE OF DATE. Join us for our webinar on scapular stabilization surgery at 1:00 pm ET | 12:00 pm CT | 11:00 am MT | 10:00 am PT. One of the classic symptoms of FSHD is "scapular winging." The muscles around the shoulder blade (scapula) weaken and allow the bone to jut out like an angel's wing. This can cause pain and prevent a person from being able to raise the arm. A solution that works…
Find out more »Sep
2
FSHD Society Radio
Tim Hollenback, FSHD Radio host 9:00 PM ET | 8:00 PM CT | 7:00 PM MT | 6:00 PM PT Join host Tim Hollenback on Facebook Live on the first Wednesday evening every month. During the hour-long program, you'll get to meet fascinating guests discussing a wide range of topics of interest to our community. Mark your calendar. Invite your friends to a listening party and chat with fellow Facebook listeners in the comments section. It's a great community event!
Find out 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.
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