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Chicagoland Chapter

Home / Connect / Local Chapters / Chicagoland Chapter

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

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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Today

January 2023

Tue 31
Featured Featured Jan 31 @ 8:00 pm - 9:00 pm

CarePartner Hour: What are your “needs”?

Zoom Virtual Meeting

8:00 – 9:00 PM ET | 7-8pm CT | 6-7pm MT | 5-6pm PT What does your partner need from you or someone who helps with their care? This came... Read More »

February 2023

Wed 1
Featured Featured Feb 1 @ 5:00 pm - 6:00 pm

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 »

Thu 9
Featured Featured Feb 9 @ 12:00 pm - 1:30 pm

Feeling Fit with FSHD: postural changes

18:00 PM CET | 17:00 PM UK | 12:00 PM Noon ET | 11:00 AM CT | 10:00 AM MT | 9:00 AM PT Join physiotherapist Ulrike Uta of the... 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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If you want to know more about this and why it is so important, learn more HERE

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Donation Address:

Department 960, P O Box 4106
Woburn, MA 01888    U.S.A.

General Mailing Address:

75 North Main Street, Suite 1073
Randolph, MA 02368 U.S.A.

(781) 301-6060

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