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...
Follow us on Facebook and to contact Chapter Director Kiley Higgs directly, please email: KansasCityChapter@fshdsociety.org
Upcoming Events
FSHD Radio: Hot off the Press
Facebook and YouTubeThursday, March 23rd On the 4th Thursday of every month, join us for FSHD Radio: Hot off the Press. Every month we will bring you a short-form show that will bring... Read More »
Feeling Fit with FSHD: Hands and arms part 2
18:00 PM CET | 17:00 PM UK | 12:00 PM Noon ET | 11:00 AM CT | 10:00 AM MT | 9:00 AM PT “FSHD is always attacking me… it never... Read More »
FSHD University: Novel treatment strategies for FSHD
Zoom web conference1:30 PM ET | 12:30 PM CT | 11:30 AM MT | 10:30 AM PT Nizar Saad, PhD Nizar Saad, PhD is an assistant professor at the Center for Gene... Read More »
KILEY HIGGS
Chapter Director
I live in Platte City, MO with my husband Chris, daughter Charley and bulldog Jager. I feel incredibly fortunate to work with not only one of the most renowned researchers in FSHD but also with the incredible patients I encounter everyday. Everything we accomplish in research is due to the amazing patients and families willing to volunteer their valuable time in pursuit of a cure for FSHD. I feel privileged to be a small part of this incredible journey and feel now is a time of hope and optimism as we are closer than ever to a cure!
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 strong, 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.
