Our look is new. Our purpose is the same. Learn more about our brand evolution.
Our look is new. Our purpose is the same. Learn more about our brand evolution.
The Chicagoland chapter of the FSHD Society is a local group of people, families, and advocates working together to support those living with facioscapulohumeral muscular dystrophy (FSHD). Whether you join us in person or virtually, our chapter offers a place to connect with others who understand what you’re going through.
We provide support, share local resources, and keep you informed on the latest research and care. Whether you’re newly diagnosed or have been living with FSHD for years, we’re here to support you, every step of the way.
Join your local chapter and learn how we can support you on your FSHD journey.
Mary Mauch and Suzanne “Suzy” Kosten are the co-directors of the Chicagoland Chapter. They are deeply committed to leading the chapter and supporting their local community.
Mary was diagnosed with FSHD in 2018, and both her mother and brother also have FSHD Type 1. Suzy’s family has also been impacted, with one of her five children living with the condition.
Together, Mary and Suzy are dedicated to building a strong, supportive community. They look forward to providing resources, fostering connections, and helping others navigate the challenges of living with FSHD.
Contact Mary & Suzy directly or visit the Chicagoland Facebook page.
While Mary & Suzy are powering the path forward, we’re always looking for passionate individuals to help with planning events, spreading the word, and working on other projects. Your involvement will make a big difference in growing the chapter and supporting those affected by FSHD.
Contact Beth Johnston, Chief of Volunteer Leadership to learn how you can make an impact and get involved.
