HDSA-Arizona Chapter

HDSA-Arizona Chapter HDSA is the premier nonprofit organization dedicated to improving the lives of everyone affected by Huntington’s disease and their families.

As the Arizona chapter, we are dedicated to supporting our HD community and continuing to fight for a cure. Huntington's Disease (HD) is a devastating, hereditary, degenerative brain disorder that results in a loss of cognitive, behavioral and physical control, and for which, presently, there is no treatment or cure. HD slowly diminishes the affected individuals ability to walk, think, talk and reason. Symptoms usually appear in an individual between 30 and 50 years of age and progress over a 10 to 25 year period. Eventually, a person with HD becomes totally dependent upon others for his or her care. More than 30,000 people in the United States are currently diagnosed with HD and 200,000 are at risk. Each of their siblings and children has a 50 percent risk of developing the disease. Although medications can relieve some symptoms in certain individuals, research has yet to find a means of conquering or even slowing the deadly progression of HD.

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

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

Hear from recipients of HDSA’s Donald A. King Summer Research Fellowship as they share their research and what they are ...
09/17/2026

Hear from recipients of HDSA’s Donald A. King Summer Research Fellowship as they share their research and what they are learning about Huntington’s disease.

Recorded at the 41st Annual HDSA Convention, this presentation offers a look at the questions these emerging researchers are exploring and the discoveries they hope to advance.

The fellowship gives students hands-on experience in HD research and an opportunity to connect with the HD community.

Learn more about HDSA’s research programs at HDSA.org and visit: https://youtu.be/ibyjaT4lJHc to watch the full video

Tomorrow, Friday, September 18th, is HDSA's Founder’s Day of Giving 2026, celebrating 59 years of Marjorie Guthrie's vis...
09/17/2026

Tomorrow, Friday, September 18th, is HDSA's Founder’s Day of Giving 2026, celebrating 59 years of Marjorie Guthrie's vision of making a difference in the lives of those affected by HD.

There are multiple ways you can join us. Every contribution counts. One way to show your support is by giving. Your gift will now be matched, dollar for dollar, up to $40,000, thanks to the Guthrie Family and another generous donor! Let’s work together to unlock the full power of our matching campaign, hit our target, and provide 2X the resources and services to families affected by HD!

Double Your Impact:
https://give.hdsa.org/campaign/836039/donate

Marjorie trusted in the strength of unity to discover solutions.Join us this Friday, September 18th, 2026, as we honor M...
09/15/2026

Marjorie trusted in the strength of unity to discover solutions.

Join us this Friday, September 18th, 2026, as we honor Marjorie and her legacy by raising critical funds, voices, and awareness for the HD community across the country and around the world.

Join us. This Founder’s Day, your donation can be doubled: a generous friend of the mission will match every dollar, up to $20,000. Increase your impact.

Boost support for HD families. Donate now to help us achieve the full $20,000 match.

Give Now. Learn More:
https://give.hdsa.org/campaign/836039/donate
and
Add To Your Calendar:
https://www.addevent.com/event/5hnc64zml3xz

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