HDSA Upper Great Lakes Region

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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 more 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.

Huntington’s disease can bring changing care needs over time.In this session from the 2026 HDSA Annual Convention, explo...
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

How can we support brain health while living with Huntington’s disease?In this session from the 2026 HDSA Annual Convent...
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.

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

Upcoming event! Join us THIS Sunday for the 2026 Midwest Golf Tournament, a day of golf, community, and giving back in s...
09/22/2026

Upcoming event!

Join us THIS Sunday for the 2026 Midwest Golf Tournament, a day of golf, community, and giving back in support of HDSA. Every swing supports families affected by Huntington’s disease and fuels research for hope tomorrow!

Event Day Schedule:
8:30 AM - Breakfast & Registration
10:00 AM - New Shotgun Start Time
4:00 PM - Dinner, Auction, & Awards
To register, visit:

Watch HDSA’s recorded webinar with members of the Novartis clinical development team for an update on INVEST-HD, the Pha...
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

Because of YOU, hope is moving forward for families affected by Huntington’s disease. Thanks to your incredible generosi...
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

Marjorie Guthrie's advocacy and vision have helped shatter the silence and misunderstandings around genetic disorders. S...
09/19/2026

Marjorie Guthrie's advocacy and vision have helped shatter the silence and misunderstandings around genetic disorders. She told anyone who would listen about the need for genetic tracing and finding the biological root of this awful disease.

Today, the very organization she founded has a scientific advisory board composed of HD scientists, clinical experts, and family representatives who review applications for research funding programs across three areas.

There is still time. Support Marjorie's vision. Double your impact on HD families.
Visit: https://give.hdsa.org/campaign/836039/donate
(EVERY GIFT YOU MAKE will be matched dollar for dollar, up to $40K)

Marjorie recognized that families need accurate information to understand HD and make informed decisions. Education and ...
09/18/2026

Marjorie recognized that families need accurate information to understand HD and make informed decisions. Education and awareness were paramount. She worked diligently on breaking the silence and stigma surrounding the disease. Part of that was encouraging families to speak up and tell their stories.

Support Marjorie's vision. Double your impact on HD families.
Visit: https://give.hdsa.org/campaign/836039/donate
(EVERY GIFT YOU MAKE will be matched dollar for dollar, up to $40K)

Marjorie Guthrie was a world-class professional dancer. After learning that there was little that could be offered to he...
09/18/2026

Marjorie Guthrie was a world-class professional dancer. After learning that there was little that could be offered to her family, Marjorie rejected the idea that nothing could be done. Her response was to do something herself!

On this day in 1967, founded the Committee to Combat Huntington's Disease, now known as the Huntington's Disease Society of America (HDSA). We carry forward Marjorie's passion and dedication to supporting families impacted by HD.

Will you stand with us? Visit: https://give.hdsa.org/campaign/836039/donate
(EVERY GIFT YOU MAKE will be matched dollar for dollar, up to $40K)

On this day in 1967, founded the Committee to Combat Huntington's Disease (now known as the Huntington's Disease Socie...
09/18/2026

On this day in 1967, founded the Committee to Combat Huntington's Disease (now known as the Huntington's Disease Society of America).

Just a few weeks later, her beloved husband and folk music legend, Woody Guthrie, sadly passed away from complications related to at the age of 55. Before his passing, Marjorie made a heartfelt promise to him that she would dedicate her life to finding answers for this heartbreaking disease that also put their children at risk.

59 years later, HDSA has grown into the world's largest public nonprofit organization supporting families affected by HD and key contributors to impactful HD research.

Support Marjorie's vision. Double your impact on HD families:
https://give.hdsa.org/campaign/836039/donate

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