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
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...
Kansas City Walk & Roll to Cure FSHD - Fall 2021!
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
Apr
27
Caregiver / Sharegiver Hour
8:00 - 9:00 PM ET This monthly meeting is for those of you who are providing care to loved ones with FSHD. This virtual meeting is a safe and supportive space to share your experiences, challenges, and helpful tips with other caregivers. Please respect our rules restricting this meeting to caregivers (or "sharegivers," as Isaac Prilleltensky has proposed, because providing care to loved ones is a two-way street). Because we don't want to publicly post the Zoom meeting link (to…
Find out more »May
10
Wellness Hour (Virtual Meeting)
This is our monthly Zoom meeting on Wellness, held on the second Monday of each month at 5:00-6:00 pm ET (if Monday is a national holiday, the meeting will be held on Tuesday). It is open to everyone in the FSHD community. This is your time to enjoy the company of fellow FSHers, share challenges, talk about what works for you, and feel validated and supported in whatever you may be going through. If you are interested, please register by…
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FSHD Society Radio with Lori Brant, personal coach
9:00 PM ET | 8:00 PM CT | 7:00 PM MT | 6:00 PM PT Lori Brant Join host Tim Hollenback on YouTube on the 2nd Tuesday of every month. Call Tim at 414-375-2561 to share your thoughts, or post questions and comments in the YouTube comments section. You can also watch the recording on Facebook or access the podcast on most any streaming channel. "Our guest this month is Lori Brant, a life coach who lives with FSH muscular dystrophy.…
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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!
