HDSA Upper Great Lakes Region

HDSA Upper Great Lakes Region HDSA is the premier nonprofit organization dedicated to improving the lives of everyone affected by Huntington’s disease and their families.

What is Huntington’s Disease? Huntington’s disease is a fatal genetic disorder that causes the progressive breakdown of nerve cells in the brain. It deteriorates a person’s physical and mental abilities during their prime working years and has no cure. Every child of a parent with HD has a 50/50 chance of carrying the faulty gene. Today, there are approximately 30,000 symptomatic Americans and mor

e than 200,000 at-risk of inheriting the disease. Symptoms usually appear between the ages of 30 to 50, and worsen over a 10 to 25 year period. Many describe the symptoms of HD as having ALS, Parkinson’s and Alzheimer’s – simultaneously. In approximately 10% of cases, HD affects children or adolescents and progresses more rapidly than adult onset HD.

What are CAG repeats, and why are they important in Huntington’s disease?Recorded at the HDSA Annual Convention, this se...
07/29/2026

What are CAG repeats, and why are they important in Huntington’s disease?

Recorded at the HDSA Annual Convention, this session breaks down the science behind CAG repeats in clear, easy-to-understand terms. Learn how CAG repeat length relates to Huntington’s disease, what it may—and may not—tell us about symptoms and disease progression, and why CAGs continue to be an important focus of HD research.

Whether you are newly diagnosed, at risk, a caregiver, or simply interested in learning more about the genetics of HD, this session offers valuable information to help you better understand the ABCs of CAGs.

Visit: https://youtu.be/OXsLDsk-Bb8 to watch the full video.

Learn more about Huntington’s disease and HDSA’s programs and resources at HDSA.org.

At the 41st HDSA Annual Convention, a representative from uniQure provided an important update on AMT-130, an investigat...
07/28/2026

At the 41st HDSA Annual Convention, a representative from uniQure provided an important update on AMT-130, an investigational gene therapy for Huntington’s disease.

This session offered the HD community the opportunity to hear directly from uniQure about recent clinical and regulatory updates, including the ongoing development of AMT-130 and what these milestones may mean for families impacted by Huntington’s disease.

HDSA is grateful to uniQure for joining us at Convention and for their continued commitment to advancing research for the HD community.

To watch the full video, visit: https://youtu.be/2oWYijsRapg

New treatments for Huntington's disease are being tested around the world, but we still lack objective, sensitive ways t...
07/27/2026

New treatments for Huntington's disease are being tested around the world, but we still lack objective, sensitive ways to measure whether they're working. This talk introduces how wearable sensors, worn at home during everyday life, can capture changes in movement like walking and chorea. We will share updates on the FDA-funded MEND-HD study, including how these digital measures are being validated as clinical trial endpoints, and why making sure they reflect the symptoms that matter most to people living with HD is central to getting better treatments approved faster.

To watch the full webinar, visit: https://www.youtube.com/watch?si=OJyKVBta_CQ-Fr3f&v=l14ClVDJHGQ&feature=youtu.be

New to Huntington’s disease? You don’t have to navigate this journey alone. 💙💚Recorded at the 41st Annual HDSA Conventio...
07/23/2026

New to Huntington’s disease? You don’t have to navigate this journey alone. 💙💚

Recorded at the 41st Annual HDSA Convention, the “New to HD” session offers information, guidance, and resources for individuals and families beginning their HD journey.

Watch now: https://youtu.be/XdQRyorPkXU

Join HDSA later today, at 1:00 PM Eastern for a community webinar on how wearable sensors are shaping the future of Hunt...
07/22/2026

Join HDSA later today, at 1:00 PM Eastern for a community webinar on how wearable sensors are shaping the future of Huntington's disease clinical trials.

Learn how the FDA-funded MEND-HD study is using real-world movement data to improve how treatments are measured and help accelerate the development of new therapies.

To learn more, and register, visit: https://hdsa-org.zoom.us/webinar/register/6217839516105/WN_9D8_B5ZhRO-MxbAvrNR7XA #/registration

Join HDSA tomorrow, July 22nd at 1:00 PM for a community webinar on how wearable sensors are shaping the future of Hunti...
07/21/2026

Join HDSA tomorrow, July 22nd at 1:00 PM for a community webinar on how wearable sensors are shaping the future of Huntington's disease clinical trials.

Learn how the FDA-funded MEND-HD study is using real-world movement data to improve how treatments are measured and help accelerate the development of new therapies.

To learn more, and register, visit: https://hdsa-org.zoom.us/webinar/register/6217839516105/WN_9D8_B5ZhRO-MxbAvrNR7XA #/registration

Check out the Opening Ceremony of the 41st Annual HDSA Convention, where the Huntington’s disease community came togethe...
07/21/2026

Check out the Opening Ceremony of the 41st Annual HDSA Convention, where the Huntington’s disease community came together to connect, learn, and celebrate the strength of our shared mission.

The ceremony featured important updates from HDSA leadership, inspiring community voices, and an update on the clinical trials that take place at the HDSA Convention Together, we are moving forward as one community, united by help for today and hope for tomorrow.

To watch the full video, visit: https://www.youtube.com/watch?v=nde4OV_4f9s and to learn more about HDSA, visit HDSA.org.

Upcoming webinar!Join HDSA on Wednesday July 22nd at 1:00 PM for a community webinar on how wearable sensors are shaping...
07/17/2026

Upcoming webinar!

Join HDSA on Wednesday July 22nd at 1:00 PM for a community webinar on how wearable sensors are shaping the future of Huntington's disease clinical trials.

Learn how the FDA-funded MEND-HD study is using real-world movement data to improve how treatments are measured and help accelerate the development of new therapies.

To learn more, and register, visit: https://hdsa-org.zoom.us/webinar/register/6217839516105/WN_9D8_B5ZhRO-MxbAvrNR7XA #/registration

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