HDSA Southern Idaho Affiliate

10/09/2026

🌺 Call Your Ohana: Raise $72 in 72 Hours 🌺

The Boise Team Hope Walk is coming up next weekend, and we're challenging our Ohana to come together and make a difference for HD families.

Take the challenge:

🌴 Donate $72 yourself
or
🌴 Ask 6 members of your Ohana to donate $12 each

Make a donation here: hdsa.org/thwboise

Ohana means family, and family means no one faces HD alone.

Together, our Ohana can make a meaningful difference for HD families. Thank you for being part of Team Hope Boise. 💙🌺

10/08/2026

Get your raffle tickets at our event on October 17th.

10/08/2026

During our Team Hope Walk we will have a raffle with fantastic items. A call out to all our raffle donors: Dutch Brothers, Albertsons, Tucanos, Walmart, 3100 Cellars, Cobblestone Car Wash, Pierce Park Greens, Boise Philharmonic, Kendall Nissan, Birds of Prey, Sarah Weber, Costco, and Trader Joe's

10/07/2026

10 days till the Team Hope Walk
Saturday, October 17th. Registration begins at 10AM
Get those grass skirts and Hawaiian shirts ready for our OHANA, FAMILY IS EVERYTHING event.
https://give.hdsa.org/fundraiser/7046644

10/07/2026

Saturday, October 17th, 2026 • 11:00 am
Julius M Kleiner Memorial Park: 1900 N. Records Avenue, Meridian, ID

Join us for the Team Hope Walk, HDSA’s nationwide fundraising event bringing together families, friends, and communities to support those affected by...

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