Welcome to the Kansas City Chapter!
Thank you for visiting the Kansas City Chapter of the FSHD Society which officially launched in August 2019. 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.

Make plans now to Walk & Roll with us in 2022!
Our international Walk & Roll Celebration Livestream will take place on Saturday, September 17, 2022. Here in Kansas City, we are making plans to build on the success of last year's walk and hope you will join us!
Want to help plan or organize the Chicago Walk & Roll to Cure FSHD? I'd love to have you! Let me know at KansasCityChapter@FSHDSociety.org
Want to know more about the Walk & Roll? Learn More
Virtual FSHD FAMILY DAY
KUMC & the FSHD Society held a virtual FSHD Family Day on 11/7/20 for patients and family members to connect and learn more about advances in FSHD research.
We invite you to follow the FSHD Clinical Trail Research Network on Facebook for event updates and all things FSHD research: https://www.facebook.com/FSHDCTRN
You can view the videos from the day on YouTube or below...
Follow us on Facebook and to contact Chapter Director Kiley Higgs directly, please email: KansasCityChapter@fshdsociety.org
Upcoming Events
Women on Wellness – Transitions in mobility
Zoom Virtual MeetingFirst Wednesday of every month 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT Our topic this month is transitions in mobility. How do... Read More »
Wellness Hour – How do I talk to my family about FSHD?
Zoom Virtual Meeting5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT FSHD is a familial condition, and yet family members can hold different attitudes about how... Read More »
FSHD Radio: Community Profiles with Dylan King
Facebook and YouTubeTuesday, July 12th 9:00 PM ET | 8:00 PM CT | 7:00 PM MT | 6:00 PM PT On the 2nd Tuesday of every month, join us for FSHD Radio:... Read More »