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.
2021 Walk & Roll a Tremendous Success!
On Saturday, September 18, walkers and rollers all across North America stepped out to say "FSHD Ends with Me!"
Stay tuned as we begin the planning for our 2022 Kansas City Walk & Roll to Cure FSHD!
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
Sharegiver Hour
8:00 - 9:00 PM ET | 7-8pm CT | 6-7pm MT | 5-6pm PT This monthly meeting is for those of you who are providing care to loved ones with... Read More »
Women on Wellness
First Wednesday of every month 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT This is our mutual support and social group for women... Read More »
Wellness Hour (Virtual Meeting)
5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT Join us for our monthly Zoom meeting on Wellness, held on the second Monday of... 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.
