Liberty MO Huntington's Disease Support Group

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!

10/12/2025

International speaker and author Jimmy Pollard is joining us for a special session via ZOOM Monday, October 13 at 7 pm during Iur support group meeting

Jimmy is known worldwide for his engaging talks on Huntington’s disease and for his book Hurry Up and Wait! – a guide that has helped countless families and professionals better understand the challenges people face and how to support them. At this meeting, Jimmy will:

Explore the unique thinking challenges of Huntington’s disease

Share why these challenges can be so hard for the entire family

And is available to answer your questions!

He has visited our group several times over the years - and every time we learn more! You will want to plan to attend in person or via ZOOM, if HD is new for your family or if HD has been in your family for generations!

10/10/2025

It’s going to be so much fun! 🤩 See you there!

Sign up online at HDSA.org/thwliberty 💙Join us for a celebration and do some Christmas shopping 🎄at our auction. Breakfast by Chris Cakes will be served, too 🥞

09/14/2025

09/09/2025

09/08/2025

Greg Suter from the Hereditary Neurological Disease Centre in Wichita will be joining us in person Monday, September 8 at 7 p.m. This is a huge opportunity for us to have him! You will definitely not want to miss this chance to listen and ask questions of Greg. He has dedicated nearly 40 years to families with HD 💙

If you are unable to attend in person, please comment below with your email address and we will send you a Zoom link.

Can’t wait to see everyone Monday night!

Services

08/16/2025

Thank you for joining us at our August meeting - Anna Wilson, HDSA Missouri Chapter Social Worker (center, front)

We appreciate you answering all our questions! During her visit she announced a new Missouri virtual Caregiver Support Group. The first one will be Monday, September 22nd at 5:30 p.m. Please email Anna at awilson@hdsa.org for a link to join the meeting.