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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.
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
CarePartner Hour – Talking to family and friends
Zoom Virtual Meeting8:00 – 9:00 PM ET | 7-8pm CT | 6-7pm MT | 5-6pm PT Our topic this month is "Talking about FSHD with family and friends." Sharing a diagnosis when... Read More »
Women on Wellness – Pelvic floor issues
Zoom Virtual MeetingFirst Wednesday of every month 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT This month, we will have a physical therapist who specializes... Read More »
Wellness Hour – Coping strategies
Zoom Virtual Meeting5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT This month, join us for a discussion on coping with the changes brought about by... Read More »
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…
Stay Informed on Chapter Activities!
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.
When you sign up you'll receive the latest word on clinical trials, information on how to live strong, and about local events that will connect to our remarkable community. You will also have the option to join our patient contact registry.
If you want to know more about this and why it is so important, learn more HERE
Your personal information will be kept strictly confidential.
