Welcome to the Chicagoland Chapter!
Thank you for visiting the Chicagoland Chapter! 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.
2024 Chicagoland Walk & Roll to Cure FSHD
Our 2024 annual Walk & Roll to Cure FSHD was an amazing success this year! Thank you to everyone who participated in helping raise awareness and funds toward reaching our goal of finding treatments and a cure for FSH Muscular Dystrophy. Fundraising will continue through the end of the year.
Learn more about the Walk & Roll to Cure FSHD here.
Stay tuned as we begin planning for our 2025 Walk & Roll to Cure FSHD!
In-Person Chapter Meeting: July 11
Chicago Chapter Meeting, Saturday, July, 2024 from 6:00-7:00 pm CT
WHERE: Zoom
DETAILS: Join us for our upcoming virtual Chicago Chapter Meeting where we have some exciting updates to share. This will include updates from the Connect Conference that took place in June, as well as the Chicago Walk & Roll, and other general updates. We will also offer the chance to connect with each other and help answer any questions you may have.
In-Person Chapter Meeting: April 6
Chicago Chapter Meeting, Saturday, April 6, 2024 from 1:00 – 3:00 pm CT
WHERE: Northlake Library, 231 N Wolf Rd, Northlake, IL 60164
DETAILS: Join us on Saturday, April 6th at the Northlake Library for a special chapter meeting where we’ll introduce our new Chicagoland Chapter Directors, Mary Mauch and Suzy Kosten. These two wonderful women are excited to meet the community, get the Chicagoland chapter re-engaged, and carry on the wonderful work our previous Chapter Director, Suzie Kanewske, started. Light refreshments and snacks will be provided as we have the opportunity to connect, share ideas on how we can engage in 2024, and offer each support (and a few laughs). Please RSVP so we know how much food to bring.
The 2023 Chicago Walk & Roll to Cure FSHD
Our 2023 annual Chicagoland Walk & Roll to Cure FSHD was an amazing success this year! Thank you to everyone who participated and helped raise awareness and funds towards reaching our goal of a cure by 2025. Fundraising will continue through the end of the year.
Learn more about the 2023 Walk & Roll to Cure FSHD HERE!
Stay tuned as we begin planning for our 2024 Walk & Roll to Cure FSHD. If you would like to volunteer to support the 2024 Walk & Roll, please contact your local chapter director or walk leader.
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To reach us, please email: ChicagoChapter@fshdsociety.org
Don’t forget to follow us on FACEBOOK!
Would you like to get involved? Simply fill out the form in the sidebar.
Upcoming Events
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Mary Mauch and Suzy Kosten
Chapter Directors
Hello my name is Mary Mauch and I am extremely honored to be one of the new co-directors of the Chicagoland chapter along side my sister Suzanne Kosten.
I was officially diagnosed with FSHD in 2018. My mother and brother also have FSHD type 1.
Hello my name is Suzanne, but most friends and family know me as Suzy. With my mom, two siblings, and one of my five children diagnosed with FSHD, I feel this is an important role to take on.
We are looking forward to serving our Chicagoland community and seeing where the future takes us.
Stay Informed on Chapter Activities!
Join the world’s largest network of patients, families, clinicians, researchers, and friends advocating for FSH muscular dystrophy. Let us know you want to be a part of the local chapter and you'll never miss a meeting or event notice.
When you sign up you'll receive the latest word on clinical trials, information on how to live a better life, and about local events that will connect to our remarkable community. You will also have the option to join our patient contact registry.
If you want to know more about this and why it is so important, learn more HERE
Your personal information will be kept strictly confidential.
