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.
Join us for the 2023 Walk & Roll to Cure FSHD!
The 2023 Kansas City Chapter Walk & Roll to Cure FSHD is scheduled for Saturday, September 30, at Macken Park in North Kansas City.
We have partnered with KUMC to hold this amazing event which moves us closer to our goal of disease-modifying treatments to families by 2025. Michaela Walker and Patrick McKenney are our new Walk & Roll leaders! Help us meet our fundraising goal of $50,000 this year and light the way to a cure!
Learn more about the 2023 Walk & Roll to Cure FSHD here!
Follow us on Facebook and to contact us directly, please email: FSHCommunity@FSHDSociety.org
Upcoming Events
Women on Wellness – Adaptive cooking
Zoom Virtual Meeting , United StatesFirst Wednesday of every month 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT Adaptive cooking and adaptive eating will be our topic this... Read More »
Wellness Hour on Emergency Preparedness
Zoom Virtual Meeting , United States5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT With all the floods, hurricanes, fires, and earthquakes in the news lately, we're reminded of... Read More »
FSHD Radio: Community Profiles
Facebook and YouTubeTuesday, October 10th On the 2nd Tuesday of every month, we will bring you a new episode of FSHD Radio: Community Profiles. This long-form show includes profiles of the FSHD... Read More »
Your Name Could Be Here!
Chapter Director
The Kansas City Chapter is currently looking for a new Chapter Leader. If you are interested, or would like more information, please let us know at fshcommunity@fshdsociety.org.
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 a better life, 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.
