Chicagoland Chapter

Hello, and welcome to the Chicagoland chapter page!

This chapter was founded by Dave Lukas. We officially launched our Chapter on October 27, 2018, with a fabulous event at Northwestern Medicine Lake Forest Hospital. We have many exciting developments planned for 2019 – stay tuned for more details!

Our Next Chapter Meeting is Coming Up!

Join us on Saturday, June 29th from 2:30-4:30pm at the Mt. Prospect Public Library in Meeting Room B! We will be discussing all things research and clinical trials. It will be an informative meeting that you won’t want to miss! See more details HERE on 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 FSH Society Events calendar to search for upcoming events in your area!

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