HDSA Indiana Chapter

10/20/2026

Join us on Thursday, November 12th at 11:00 AM ET for a community webinar on the PRECISE-HD Trial, a Phase 3 study evaluating pridopidine in Huntington’s disease.

Learn more about the PRECISE-HD study, what potential participation might involve, and where to find additional information.

The presentation will feature Nils Confer, PhD, Executive Medical Director at Prilenia, along with HDSA's own Tamara Maiuri, PhD, Associate Director of Research and Patient Engagement. Allison Bartlett, Esq., Senior Manager of Disability Programs; and MaryAnn Emerick, LMSW, Senior Manager of Youth & Community Services.

To learn more, and register, visit: https://hdsa-org.zoom.us/webinar/register/WN_j8aCveJNTxCk2yzQpJj5Zg #/registration

10/16/2026

💙✨ Indiana, let’s come together for a night of HOPE!
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The Indiana Celebration of Hope is bringing our community together for a meaningful event in support of everyone impacted by Huntington’s disease. Every registration, every sponsorship, and every person who shows up helps make a difference! 💙
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🙌 Who will YOU bring with you? Tag a friend, invite your family, and help us spread the word! Let’s fill the room with people who believe in supporting our HD community and making a difference together.
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🎟️ Have you registered yet? Don’t wait! Sign up today and be part of an evening dedicated to hope, connection, and a brighter future for those impacted by HD.
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💙 Together, we are stronger. Together, we make hope possible.
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🔗 Register here: Indiana.hdsa.org/coh26
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10/14/2026

Upcoming webinar!

Join us on November 12th at 11:00 AM ET for a community webinar on the PRECISE-HD Trial, a Phase 3 study evaluating pridopidine in Huntington’s disease.

Learn more about the PRECISE-HD study, what potential participation might involve, and where to find additional information.

The presentation will feature Nils Confer, PhD, Executive Medical Director at Prilenia, along with HDSA's own Tamara Maiuri, PhD, Associate Director of Research and Patient Engagement. Allison Bartlett, Esq., Senior Manager of Disability Programs; and MaryAnn Emerick, LMSW, Senior Manager of Youth & Community Services.

To learn more, and register, visit: https://hdsa-org.zoom.us/webinar/register/WN_j8aCveJNTxCk2yzQpJj5Zg #/registration

10/07/2026

WHO ARE YOU BRINGING? 🎉
The countdown is ON for the Indiana Celebration of Hope! 💙
📅 Saturday, November 7, 2026
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It’s an evening to come together, celebrate our Huntington’s Disease Community, make memories, and create HOPE for the future.
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Don’t come alone! 👯‍♀️
Tag your Celebration Crew below 👇 and make plans to join us!
🎟️ Register today: Indiana.hdsa.org/coh26
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Let’s make this year’s Indiana Celebration of Hope one to remember! 💙
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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.

10/01/2026

REGISTER NOW ✨
Please join us for our Celebration of Hope on 11/7, to celebrate our chapter achievements from this year, what we can look forward to next year, and to help us give out our Hoosier of the Year award!

https://give.hdsa.org/event/2026-celebration-of-hope-indiana-chapter/e821718

Questions? Let us know and we will be happy to answer.

10/01/2026

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