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.

04/11/2026

Only two days remain until HDSA’s Day of Action, and the time to speak up is now. Thank you to every advocate, family member, caregiver, and supporter helping lift up the voices of those impacted by Huntington’s disease.

You can start taking action today by writing a Letter to the Editor, then join us again on April 13. Visit HDSA.org/HDdayofaction for information and updates.

04/10/2026

We are deeply grateful to everyone helping build momentum for HDSA’s Day of Action. When our community comes together with urgency and purpose, our collective voice becomes impossible to ignore.

Do not wait to get involved. Start taking action today by writing a Letter to the Editor, and visit HDSA.org/HDdayofaction to prepare for April 13.

04/09/2026

Thank you for standing with the HD community and for continuing to speak up when it matters most. Real change depends on people who are willing to act, and that is exactly what this community does.

April 13 is HDSA’s Day of Action, and you can begin today by writing a Letter to the Editor. Visit HDSA.org/HDdayofaction for updates and ways to get involved.

04/08/2026

Families impacted by Huntington’s disease do not have the luxury of time, and every day we wait is a day too long.

We are grateful for every person willing to raise their voice and help move this work forward.

You can start taking action today by writing a Letter to the Editor, then join us on April 13 for HDSA’s Day of Action.

Visit HDSA.org/HDdayofaction.

04/07/2026

Thank you to everyone who continues to show up for families impacted by Huntington’s disease. Your voice matters, and your advocacy helps keep this community moving forward.

HDSA’s Day of Action is April 13, but you do not have to wait to get involved. Start taking action today by writing a Letter to the Editor, and visit HDSA.org/HDdayofaction to learn more.

Join us in Phoenix, Arizona for an unforgettable experience at the 41st Annual from June 25-27!With world-renowned pre...
04/07/2026

Join us in Phoenix, Arizona for an unforgettable experience at the 41st Annual from June 25-27!

With world-renowned presenters, incredible workshops and the latest in Research - the HDSA Convention is a can't miss experience.

Secure your spot by visiting: https://give.hdsa.org/.../2026-hdsa-annual.../e763798

On Monday, April 13, we are calling on you to help ensure that members of Congress hear directly from the Huntington’s d...
04/06/2026

On Monday, April 13, we are calling on you to help ensure that members of Congress hear directly from the Huntington’s disease (HD) community by phone and/or email.

How You Can Take Action Today:
Submit a Letter to the Editor to your local newspaper.
Use the sample Letter to the Editor to help raise awareness in your local community and encourage public support for families impacted by Huntington’s disease.
CLICK HERE:https://hdsa.org/advocacyhome/TakeAction/?vvsrc=%2fBlogPosts%2f8626

Find out more about the Huntington’s Disease Day of Action, here: www.hdsa.org/hddayofaction

We acknowledge HD Gene Discovery Day as a moment to reflect on how far the Huntington’s disease community has come since...
03/23/2026

We acknowledge HD Gene Discovery Day as a moment to reflect on how far the Huntington’s disease community has come since 1993.

This is a time to recognize the progress made possible through the strength, courage, and partnership of families, researchers, clinicians, advocates, and volunteers across the HD community.

For more than three decades, families impacted by Huntington’s disease have helped move this work forward in deeply meaningful ways — by sharing their stories, participating in research, supporting one another, raising their voices, and continuing to show up for this community again and again.

Because of that collective commitment, we know more now than we did in 1993. We have made meaningful progress, and we continue to move forward together with purpose and hope.
At HDSA, we are honored to stand with this community as we continue working toward better treatments, better care, and a better future for all families impacted by Huntington’s disease.

To read the full article, visit:https://hdsa.org/wp-content/uploads/2026/03/Researchers-Locate-Gene-That-Triggers-Huntingtons-Illness-The-New-York-Times.pdf

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+12122421968

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