Welcome to the Chicagoland Chapter!
Thank you for visiting the Chicagoland Chapter of the FSHD Society which officially launched in October 2018. 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.
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Join Us for Our Chicagoland FSHD Family Day Conference
On Sunday, October 20th at the Shirley Ryan AbilityLab in Chicago, we will be having our first-ever FSHD Family Day Conference to grace the shores of Lake Michigan. Join family, friends, and fellow travelers living with FSH muscular dystrophy for a wonderful half day of learning and connecting. You’ll meet the region’s leading doctors and specialists, such as Drs. Charulatha Nagar and Susan Keeshin, to learn about best practices in managing symptoms, genetic testing, family planning, etc. You’ll be able to ask top experts about the latest clinical trials and advances in developing treatments. You’ll meet amazing leaders in our community. For more information or to purchase your tickets, visit the event page.
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The Walk & Roll
On Saturday, Sept. 14th in Citizens Park, Barrington, IL we came together to raise awareness, build our community, and raise money toward a cure!
It was a tremendous success! You can visit our event page HERE!
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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
Dec
7
Webinar: The ABC’s of clinical trials with Dr. Rabi Tawil
This year, Acceleron’s ACE-083 drug is expected to complete its phase 2b trial, and Fulcrum is conducting its trial of Dr. Rabi Tawil the first drug intended to repress DUX4, the gene implicated in causing FSHD. This is a good time to brush up on the vocabulary of clinical trials and the FDA approval process, and learn how to navigate the path to volunteering for trials. Your guide is Rabi Tawil, MD, who is principal investigator for several clinical trials…
Find out more »
FSHD Radio – December show
Join radio host Tim Hollenback via Facebook Live on Wednesday, December 18, at 9:00 PM EST - topic TBD
Find out more »
DAVE LUKAS
Chapter Director
Dave feels passionately about building a strong chapter in the Chicagoland area because he believes in the power of shared connection through this disease. Whether as someone who’s affected or someone who loves someone who’s affected, building a community around each other allows us all to gain strength, support and encouragement so we can push towards a cure for this disease and be an advocate for us all. Dave lives in the northwest suburbs of Chicago with his wife, 3 kids and Siberian Husky pup.
Stay Informed on Local Activities
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