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.
Our Kansas City Chapter Family is Growing!
Please join us in welcoming little Ara to the family!
KC Chapter Director, Kiley Higgs, and her family welcomed little Ara to the world earlier this year. Congratulations, Kiley!
In recent weeks, our world has been highly impacted by the corona virus pandemic; most recently with the “stay-home” order in the greater Kansas City area. We are following the CDC and local government recommendations and regulations while remaining committed to our local families and patients.
With this in mind, our Kansas City Chapter Meetings will go on VIRTUALLY.
Please join us (details below.) We must remain socially distant, but we are committed to staying connected!
Follow us on Facebook and to contact Chapter Director Kiley Higgs directly, please email: KansasCityChapter@fshdsociety.org
Would you like to get involved? Simply fill out the "Stay Informed on Local Activities" form to the right
Upcoming Events
Jun
3
FSHD Society Radio with Mitch and Bill
Tim Hollenback, FSHD Radio host 9:00 PM ET | 8:00 PM CT | 7:00 PM MT | 6:00 PM PT Join host Tim Hollenback on Facebook Live on the first Wednesday evening every month. During the hour-long program, you'll get to meet fascinating guests discussing a wide range of topics of interest to our community. Mark your calendar. Invite your friends to a listening party and chat with fellow Facebook listeners in the comments section. Tim and his guests would…
Find out more »FSHD Radio Sequester Camp
7:00 PM ET | 6:00 PM CT | 5:00 PM MT | 4:00 PM PT We're In This Together During this time of self-isolation because of the covid-19 crisis, it’s important to stay connected. Join FSHD Radio show host Tim Hollenback every Wednesday evening on Facebook Live for an open-ended conversation about whatever is on your mind. Whether you just need someone to talk to, are trying to solve a problem, or have ideas to share, we welcome your voice. You can…
Find out more »FSHD Radio Sequester Camp
7:00 PM ET | 6:00 PM CT | 5:00 PM MT | 4:00 PM PT We're In This Together During this time of self-isolation because of the covid-19 crisis, it’s important to stay connected. Join FSHD Radio show host Tim Hollenback every Wednesday evening on Facebook Live for an open-ended conversation about whatever is on your mind. Whether you just need someone to talk to, are trying to solve a problem, or have ideas to share, we welcome your voice. You can…
Find out 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 Local Activities
Are you not already a member of the Society? Sign-up via our new member form and get connected!
