Chicagoland Chapter

Thank you for visiting the Chicagoland Chapter of the FSHD Society which officially launched in October 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.

Join Us for Our Chicagoland FSHD Family Day Conference

On Sunday, October 20th at the Shirley Ryan AbilityLab in Chicago, we will be having our first-ever FSHD Family Day Conference to grace the shores of Lake Michigan. Join family, friends, and fellow travelers living with FSH muscular dystrophy for a wonderful half day of learning and connecting. You’ll meet the region’s leading doctors and specialists, such as Drs. Charulatha Nagar and Susan Keeshin, to learn about best practices in managing symptoms, genetic testing, family planning, etc. You’ll be able to ask top experts about the latest clinical trials and advances in developing treatments. You’ll meet amazing leaders in our community. For more information or to purchase your tickets, visit the event page.

The Walk & Roll

We have scheduled our 2019 fundraiser, the Walk & Roll to Cure FSHD! Please join us on Saturday, Sept. 14th in Citizens Park, Barrington, IL to raise awareness, build our community, and raise money toward a cure! You can register or make a donation by visiting our page HERE!


To reach us, please email:

Visit the FSHD Society Events calendar to search for upcoming events in your area!

Don’t forget to follow us on FACEBOOK!

Would you like to get involved? Simply fill out the form below: