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.

2022 Walk & Roll Graphic for Chapter Pages

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 DAYKUMC Jayhawk

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...

KUMC FSHD Welcome & Overview
FSHD AI Registry Report
COVID-19 Survey Results
Multidisciplinary Panel - FSHD Providers
Patient Panel
FSHD Therapeutic Updates
FSHD Society Presentation

Follow us on Facebook  and to contact Chapter Director Kiley Higgs directly, please email: KansasCityChapter@fshdsociety.org

Upcoming Events

Today

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Women on Wellness: On Mattering

Zoom Virtual Meeting

First Wednesday of every month 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT This month we'll be talking about "mattering," feeling valued as a... Read More »

Featured Featured

Wellness Hour: Holiday revels

Zoom Virtual Meeting

5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT This month, you're invited to come dressed in Zoom-worthy holiday apparel, with favorite seasonal libations... Read More »

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Kiley Higgs

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.

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