Liberty MO Huntington's Disease Support Group

08/31/2026

This workshop is not affiliated with HDSA. But, it is in NKC and will cover many questions about young people who are disabled and their care/need for assisted independence. Looks like a good one. Center for Human Services is involved. Follow the link for workshop description.

https://www.summitfuturefoundation.org/whatsnextworkshop?fbclid=IwdGRjcAUCfwlwZG9mBWZkaWQWUNjN4GAwiz4MDYljDg6cHljy6Y3ZImV4dG4DYWVtAjExAHNydGMGYXBwX2lkCjY2Mjg1NjgzNzkAAR42p9ItFjMlLR0XBaiH7rU25lxaBFcHE2Yh6hAxNAcdBrB33y5GtKoScsTckg_aem_hgmvzn6B-fj-QyQ3MyeBuA

The What's Next Workshop is a full-day education and training event for parents, caregivers, and professionals to learn about what life after high school can look like for young adults with disabilities. Provided by Summit Future Foundation and collaborating partners.

08/25/2026

RSVP for this FREE family event sponsored by Help for Huntington’s KC🩷💙

🍿FREE family fun event! Join us for food 🌮, games🎉 and laughter😅! RSVP to Rosalie

04/22/2026

https://time.com/article/2026/04/17/huntingtons-disease-pioneer-nancy-wexler-memoir/?fbclid=IwdGRjcARWHAJleHRuA2FlbQExAHNydGMGYXBwX2lkCjY2Mjg1NjgzNzkAAR4tgG49b6XoR38vuWnbot6Wnu5LwlyOd2K8UIm2Fscl5fSbBolWnVbtgxYeZA_aem_bAQlH4c3q7W7Ff8dC054vA

The renowned scientist reflects on the disease that shaped her life—professionally and personally.

12/13/2025

Thank you Help for Huntington’s KC for all you do for our families!

10/30/2025

Huntington’s Disease Society of America (HDSA) is hosting a special two-part webinar to discuss recent updates from uniQure regarding their gene therapy for Huntington’s disease.
🧬 Webinar: What the AMT-130 News Means for the HD Community
📅 Thursday, October 30
🕑 *2:00–4:00 PM ET (*1:00pm – 3:00pm CST)
The event will include expert perspectives from Dr. Walid Abi-Saab (uniQure) and Dr. Sarah Tabrizi (University College London), followed by a live Q&A discussion with HDSA team members.

10/25/2025

Thank youHDSA Missouri Chapter and Help for Huntington’s KC for a great morning together!

10/20/2025

Can’t wait!

See you Saturday!!!

10/17/2025

Monday night we heard Jimmy Pollard speak about the Huntington’s Disguise and the idea of Hurry up and Wait. Below is information on his book.

From Jimmy:

Amazon is selling “Hurry Up & Wait!” for $45.00. That has nothing to do with me. I do not, never have and will never sell it through Amazon. I would never set such an exorbitant price! Do NOT buy it there!!!!

It is available at www.Lulu.com for $12.00. It is self-published on Lulu. The price is set at a production minimum, so that I do NOT make a profit.

Here’s the story. I self-published “Hurry Up & Wait: A Cognitive Care Companion for Huntington’s Disease in the Middle and More Advanced Years” in 2008. It’s been translated into 9 other languages by HD associations: Portuguese, Norwegian, French, German, Polish, Italian, Dutch, Slovenian and Greek. There are more than 8,000 copies in print. It’s distributed for free by four US HD clinics to new patients and is available for purchase on several national HD associations' websites.. People continue to buy copies through Lulu. It’s been well received for 17 years now.

If you’re interested in a copy now or in the future, simply go to www.Lulu.com, search “Pollard Hurry Wait” and it will pop right up.

Self-publish and print books on demand. Sell worldwide, grow profits, and scale with tools for authors, businesses, and publishers—no inventory needed.

10/15/2025

Join us for this fun event!