Lighting the Way to a Cure

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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.

2022 Walk & Roll Graphic for Chapter Pages

Make plans now to Walk & Roll with us in 2022!

Our international Walk & Roll Celebration Livestream will take place on Saturday, September 17, 2022. Here in Chicago, we are making plans to build on the success of last year's walk and hope you will join us!

Want to help plan or organize the Chicago Walk & Roll to Cure FSHD? I'd love to have you! Let me know at ChicagoChapter@FSHDSociety.org

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

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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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Wellness Hour

Zoom Virtual Meeting

5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT Our monthly Zoom meeting on Wellness is held on the second Monday of each month... Read More »

SEE ALL EVENTS

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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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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.

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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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