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!
The Kansas City Walk & Roll to Cure FSHD
Our 2020 Walk & Roll has gone VIRTUAL! Please join us, and invite your family and friends from wherever they are to join us too!
We will "see" you on Saturday, September 12, 2020 - when all of our Chapters nationwide will join together!
Click the button below to register or donate!
All of our worlds have been highly impacted by the corona virus pandemic, yet our commitment to our families remains the same. This is why we must continue to move forward!
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
Aug
20
Webinar on scapular stabilization surgery
Dr. Anthony Romeo NOTE CHANGE OF DATE. Join us for our webinar on scapular stabilization surgery at 1:00 pm ET | 12:00 pm CT | 11:00 am MT | 10:00 am PT. One of the classic symptoms of FSHD is "scapular winging." The muscles around the shoulder blade (scapula) weaken and allow the bone to jut out like an angel's wing. This can cause pain and prevent a person from being able to raise the arm. A solution that works…
Find out more »Sep
12
Kansas City Walk & Roll to Cure FSHD
Please mark your calendars: The 2020 Kansas City Walk & Roll to Cure FSHD has gone VIRTUAL! We will see you on Saturday, September 12, 2020 Please reach out to the Chapter Director, Kiley Higgs, with any questions! She can be reached at KansasCityChapter@FSHDSociety.org We look forward to "seeing" you on September 12th!
Find out more »Dec
2
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…
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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!
