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.
Volunteer Spotlight: Dave Lukas
Hear from your Chapter Director, Dave Lukas, about his journey with FSHD, how he got involved with the FSHD Society, and why he's hopeful for the future.
To reach us, please email: ChicagoChapter@fshdsociety.org
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Would you like to get involved? Simply fill out the form in the sidebar.
Upcoming Events › All Chapters
Join us this month for a follow-up discussion from last month, when the focus was on the Fulcrum clinical trial results. We felt it would be timely to discuss "clinical trial readiness" from a personal standpoint. If a Phase 3 trial were to be announced, would you volunteer? What questions would you have? What might keep you from volunteering? How are you going to talk about this with children or other family members who might be eligible? If you haven't…Find out more »
9:00 PM ET | 8:00 PM CT | 7:00 PM MT | 6:00 PM PT This month's guests are Ally Roets and her son, Sam Ray. Together with Kristin Zwickau, they are co-leading our early-onset FSHD chapter for families that have members who developed symptoms of FSHD in early childhood. This form of FSHD brings unique challenges. We seek to connect early-onset families around the world through this chapter so that they can share their knowledge and advocate for research…Find out more »
Team Captain Rally | Saturday, August 14th 12:00pm - 1:00pm ET/11:00 - 12:00pm CT/10:00am - 11:00am MT/9:00am - 10:00am PT We're bringing together team captains from across the US and Canada, via Zoom, so that we can celebrate and honor our team captains. We know that captains put in a lot of extra time and effort to rally their family and friends for FSHD and we know their efforts make a real and lasting impact. That is worth building on and celebrating.…Find out more »