US BetterLife participants please log into BetterLife at us.betterlifefshd.org.
Français du CanadaThe 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.
Nous vous apportons notre soutien, nous partageons les ressources locales et nous vous tenons informé des dernières recherches et des soins les plus récents. Que vous soyez nouvellement diagnostiqué ou que vous viviez avec la FSHD depuis des années, nous sommes là pour vous soutenir, à chaque étape de votre parcours.
Rejoignez votre section locale et apprenez comment nous pouvons vous aider dans votre parcours avec la FSHD.
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 ou 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.
Contacter Beth Johnston, chef de la direction des bénévoles pour savoir comment vous pouvez avoir un impact et vous impliquer.
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