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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Mid-Atlantic Walk & Roll to Cure FSHD a Success!
Our 2020 Virtual Walk & Roll was fantastic, thanks to all of you! Our chapter overcame all the obstacles 2020 threw at us. You invited your family and friends and they showed up!
On Saturday, September 12, 2020 we joined with Chapters nationwide to celebrate in a 4-hour Facebook livestream event. It was awesome.
Did you participate? You can still earn some great rewards. The deadline for prizes is September 25th. Have some fun pictures or video to share? Add them to our google folder HERE
If you haven't had a chance to chip in, it's not too late to help us reach our goal.
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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
Oct
1
Webinar: COVID-19 Response Survey report
1:00 pm ET | 12:00 pm CT | 11:00 am MT | 10:00 am PT. Leann Lewis, MSGC Katy Eichinger, DPT This past spring, the FSHD Society and FSHD UK distributed a survey from the University of Rochester to assess how the neuromuscular patient community was responding to the social distancing policies imposed by the COVID-19 pandemic. We are so grateful to the hundreds of you who responded. The key investigators, Leann Lewis and Katy Eichinger, will present their findings…
Find out more »Dec
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. Call Tim with your questions…
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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