Welcome to the Chicagoland Chapter!

Thank you for visiting the Chicagoland Chapter! 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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To reach us, please email: ChicagoChapter@fshdsociety.org

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Upcoming Events

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Women on Wellness: Life Hacks

Zoom Virtual Meeting

First Wednesday of every month 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT Let’s learn from each other by sharing great tricks for... Read More »

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Susie Kanewske

Susie Kanewske

Chapter Director

Hi! I’m Susie Kanewske and I’m very excited to be taking the role of Director for the Chicagoland Chapter! I was diagnosed in 2014, at the age of 63, and immediately became involved with the FSHD Society. I had no idea what this disease was, but I would soon find out. I believe my Mother had it, unknowingly, but passed away at 52 from pneumonia.

I was asked to start a Support Group in Portland in 2015 and later having moved to the state of Washington, became the PNW Chapter Director until moving to Chicago in the Fall of 2021.

I’m thrilled to be here as my only 2 grandchildren are only 20 minutes away from me! I’m anxious to get to know you all…

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