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.
Thank you for supporting the Walk & Roll in 2022!
A huge THANK YOU to everyone who walked, rolled, and donated for this year's virtual Walk & Roll to Cure FSHD! We are thrilled to announce that your funds are moving us closer to our goal of treatments and a cure to our families!! There is still time to contribute, and you can do so here: https://team.fshdsociety.org/kansascitywalkroll
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...