HDSA Georgia Chapter

10/07/2026

Watch Part 2 of the Clinical Trials Showcase, recorded at the 2026 HDSA Annual Convention in Phoenix, Arizona.

Continue exploring Huntington’s disease clinical research and the role clinical trials play in advancing potential treatments. This session offers individuals and families impacted by HD an opportunity to learn more about research and the hope driving our community forward.

Visit: https://youtu.be/6WuuOHgK1JA to watch the full video, and learn more about HDSA’s resources, research, and ways to get involved at Huntington's
Disease Society of America.

Help for Today. Hope for Tomorrow.

10/05/2026

Let’s Talk About the BLA Update: What It Means for the HD Community

Join Tam, Allison, and Maryann for a conversation about the Biologics License Application (BLA) update and what it means for the Huntington’s disease community.

Together, they break down the terminology, discuss questions on the minds of individuals and families impacted by HD, and offer perspective on navigating hope and uncertainty as the community follows the path toward potential new treatments.

Visit: https://www.buzzsprout.com/2092862/episodes/19896338-let-s-talk-about-the-bla-update-what-it-means-for-the-hd-community.mp3?download=true to listen to the full episode.

10/02/2026

Watch Part 1 of the HDSA Clinical Trials Showcase, recorded at the 2026 HDSA Annual Convention in Phoenix, Arizona.

Hear from presenters about clinical trials in Huntington’s disease and the ongoing work to advance potential treatments. This session offers individuals and families impacted by HD an opportunity to learn more about clinical research and its role in moving research forward.

Visit: https://youtu.be/StXXf0oWkVw to watch the full video, explore more sessions from the HDSA Annual Convention on our YouTube channel, and visit https://hdsa.org for resources and support.

Help for Today. Hope for Tomorrow.

09/29/2026

Where things stand with AMT-130

AMT-130 is a one-time gene therapy for HD, delivered through brain surgery and developed by uniQure.

A year ago, uniQure reported that people who received the higher dose declined about 75% more slowly over three years than a comparison group of people with HD from the Enroll-HD study. This was based on the study's main measure, which combines movement, thinking, and daily function (cUHDRS).

Late last year, the FDA raised concerns about relying on a comparison group from outside the study. In June, the FDA agreed that the three-year results could support an application for accelerated approval. This pathway can make a treatment available sooner, but the company must then confirm the benefit in another study. uniQure submitted that application earlier this month, and the FDA has not yet made a decision.

Today, uniQure shared more results. On the main measure (cUHDRS), treated people declined about 44% more slowly than the comparison group. This difference is smaller than last year and no longer statistically clear, partly because treated people declined faster in the fourth year. Daily function (Total Functional Capacity, or TFC) held up better, still declining about 60% more slowly, similar to last year. A spinal fluid marker of nerve damage (NfL) stayed close to where it started, a hint that the treatment may be protecting nerve cells.

uniQure believes many people with faster-moving HD dropped out of the comparison group over time, which would make the treatment look less effective. This is a known challenge with outside comparison groups, and it's why the follow-up study is so important. uniQure says that study will include about 200 people, will not use placebo surgery, and could begin screening by the end of the year.

These are small studies, and there is more to learn. For the full update, including safety information, visit:https://hdsa.org/wp-content/uploads/2026/09/uniQure-Announces-Additional-Data-from-Ongoing-Phase-I_II-Studies-of-ifezuntirgene-inilparvovec-AMT-130-in-Huntingtons-Disease-Showing-Continued-Slowing-of-Disease-Progression.pdf to learn more

09/29/2026

Huntington’s disease can bring changing care needs over time.

In this session from the 2026 HDSA Annual Convention, explore how individuals and families can plan for those changes, work with their care team, and find support along the way.

Whether you are newly navigating HD or looking ahead to the next stage of care, this conversation offers a starting point for planning and asking questions.

Find HDSA care and support resources at hdsa.org.

Visit: https://youtu.be/m5fpCZEflbo to watch the full video

09/28/2026

How can we support brain health while living with Huntington’s disease?

In this session from the 2026 HDSA Annual Convention, explore cognitive changes associated with HD and practical ways individuals and families can support everyday well-being.

Watch for information and ideas to help you better understand cognitive wellness and start conversations with your care team.

Learn more about HDSA’s resources and support at hdsa.org.

Visit: https://youtu.be/2rVeWdLWn6w to watch the full video.

09/24/2026

09/23/2026

Learn more about our upcoming HD Clinical Trials Support Group taking place on Monday, September 28th from 6:00 to 7:00 PM EDT.

A welcoming, ongoing space for those in the HD community to connect, ask questions, and talk about clinical research and trials.

Whether you have participated in a study, are currently involved in a trial, are considering participating, or simply want to learn more about current research opportunities, this group offers a place to share experiences, gain support, and navigate the research journey together.

Research can bring a rollercoaster of emotions: from hope and excitement to uncertainty, disappointment, and everything in between.

This is a space where those feelings can be shared and understood.

To learn more, visit: https://heypeers.com/meetings/60817/details

09/22/2026

Watch HDSA’s recorded webinar with members of the Novartis clinical development team for an update on INVEST-HD, the Phase 3 trial evaluating votoplam for Huntington’s disease.

Dr. Beth Borowsky and Dr. Harry Ramos explain the study, discuss its rollout, and answer questions submitted by the HD community.

At the time of the webinar, the first study sites had opened in North America, with additional sites expected worldwide.

The trial aims to include approximately 770 participants across more than 30 countries.

To watch the full video visit: https://youtu.be/1bOMREtAPgA

09/21/2026

Because of YOU, hope is moving forward for families affected by Huntington’s disease. Thanks to your incredible generosity, the 2026 HDSA Founder’s Day of Giving has raised $70,000 toward our $80,000 goal, including $30,000 in matching gifts! Every gift, share, and act of support reminds HD families that they are not alone.

Now, we’re just $10,000 away. If you’ve been waiting for the right moment to give, this is it. Please make a gift today and help us reach $80,000. Every dollar matters. Every gift makes a difference. And together, we can give HD families something they need most: hope.

Support Marjorie's vision.
Visit: https://give.hdsa.org/campaign/836039/donate