Welcome to the Chicagoland Chapter

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.

Ofrecemos apoyo, compartimos recursos locales y le mantenemos informado sobre las últimas investigaciones y cuidados. Tanto si le acaban de diagnosticar como si lleva años viviendo con FSHD, estamos aquí para apoyarle en cada paso del camino.

Únete a tu sección local y descubra cómo podemos ayudarle en su proceso con la FSHD.

Conoce al equipo

• 

  Mary Mauch y Suzy Kosten

  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 o visit the Chicagoland Facebook page.