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.
Virtual FSHD FAMILY DAY
Join KUMC & the FSHD Society for our virtual FSHD Family Day event this November. This event is for patients and family members to connect and learn more about advances in FSHD research.
November 7th at 9:00am – 2:00pm CST
You can follow the FSHD Clinical Trail Research Network on Facebook for event updates and all things FSHD research: https://www.facebook.com/FSHDCTRN
Because it is virtual, we welcome anyone from anywhere to join us. Contact Grace with any questions at gkleindienst@kumc.edu
We hope to “see” you there! See the full agenda and reserve your tickets HERE: https://hopin.to/events/fshd-family-day
Download the event flyer here: FSHD Family Day
Kansas City Walk & Roll to Cure FSHD a Success!
Our 2020 Virtual Walk & Roll was fantastic, thanks to all of you! Our chapter overcame all the obstacles 2020 threw at us. You invited your family and friends and they showed up!
On Saturday, September 12, 2020 we joined with Chapters nationwide to celebrate in a 4-hour Facebook livestream event. It was awesome.
Did you participate? You can still earn some great rewards. The deadline for prizes is September 25th. Have some fun pictures or video to share? Add them to our google folder HERE
If you haven't had a chance to chip in, it's not too late to help us reach our goal.
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
Nov
7
Kansas City FSHD Family Day
Virtual FSHD FAMILY DAY Join KUMC & the FSHD Society for our virtual FSHD Family Day event this November. This event is for patients and family members to connect and learn more about advances in FSHD research. November 7th at 9:00am - 2:00pm CST You can follow the FSHD Clinical Trail Research Network on Facebook for event updates and all things FSHD research: https://www.facebook.com/FSHDCTRN Because it is virtual, we welcome anyone from anywhere to join us. Contact Grace with any…
Find out more »Dec
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FSHD Society Radio
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. Call Tim with your questions…
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!
