HDSA Center of Excellence at Washington University

11/17/2025

https://huntingtonsdiseasenews.com/columns/dont-overlook-importance-care-caregiving/?mc_euid=f48c95a1df&utm_source=HUN&utm_campaign=458fa1389e-Email_ENL_US_HUN&utm_medium=email&utm_term=0_f42d6c3322-458fa1389e-73211485

For National Family Caregivers Month, columnist Carlos Briceño pays tribute to the folks who choose love over despair every day.

11/15/2025

In an effort to provide additional support, HDSA will be hosting another session this Tuesday, November 18th, at 6 PM EST. The session is open to anyone under the age of 35 years old who wants to ask additional questions and/or discuss the most recent news from uniQure and the FDA.

This session will be facilitated by MaryAnn Emerick, LMSW and Katie Dykman, LISW.

To join us, please visit: https://www.heypeers.com/meetings/47329/details

If you are not able to make this session, check out additional support group opportunities: https://hdsa.org/find-help/community-social-support/hdsa-support-groups/

11/11/2025

https://huntingtonsdiseasenews.com/columns/cuts-research-steal-time-we-cant-buy-back-huntingtons-disease/?mc_euid=f48c95a1df&utm_source=HUN&utm_campaign=319912ee17-Email_ENL_US_HUN&utm_medium=email&utm_term=0_f42d6c3322-319912ee17-73211485

Columnist Carlos Briceño argues for the importance of funding for studies into Huntington's disease in the face of cuts to medical research.

11/04/2025

11/04/2025

MISSOURI HDSA CHAPTER is kicking off NATIONAL FAMILY CAREGIVERS MONTH with “Wellness Wednesday" Segments.

Every Wednesday this month, the Missouri Chapter will feature opportunities to extend care and appreciation to our HD caregivers.

We want each of our caregivers to know that their devotion, time, tears, and energy are noticed and deeply appreciated by their loved ones and the HD community.

Stay tuned for more details to come and please be sure to log onto FB tomorrow to be a part of kicking off the WELLNESS WEDNESDAY series and honoring our HD Caregivers.

Wed Nov 5th: "HD Cares to Share" Wellness Wednesday Segment
Help us celebrate our wonderful caregivers with a tribute starting Wednesday Nov 5th by offering a "shout out," words of thanks, and appreciation to our caregivers via Facebook posts.

Wed Nov 12th: Virtual Coffee and Connection
8:30- 9 AM Session- zoom link to come

Wed Nov 19th: Virtual Reflection Time
5:30-6 PM Session-zoom link to come

Wed Nov 26th: Virtual Care and Connect
8:30-9 AM Session- zoom link to come

*Monday Nov 24th -Missouri HD Virtual Caregivers Support Group FOURTH Monday monthly at 5:30 pm (email awilson@hdsa.org for additional information.)

11/03/2025

https://en.hdbuzz.net/uniqure-and-fda-no-longer-in-alignment-on-approval-pathway-for-amt-130/

In a new press release, uniQure shared that the FDA no longer agrees with their approach for advancing AMT-130, specifically the use of an external control group. The path forward is uncertain, but uniQure remains committed to the HD community.

10/27/2025

This is quite powerful. Thank you to our patients and family members who have taught future medical providers in lecture halls, clinic appointments, and in all of the places you advocate for being seen and understood.

Columnist Tanita Allen describes her second experience sharing her Huntington's story with students at Case Western Reserve University.

10/24/2025

https://en.hdbuzz.net/additional-clarity-what-we-know-4-weeks-after-the-uniqure-news/

We’re 4 weeks out from uniQure’s positive update about AMT-130 that took the world by storm. Does the data match the media hype? Where do uncertainties remain? And what are some of the key questions from the Huntington’s disease community?