HDSA Utah Chapter

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

The Huntington's Disease Society of America is the largest 501(c)(3) non-profit volunteer organization dedicated to improving the lives of everyone affected by Huntington's Disease. Founded in 1968 by Marjorie Guthrie, wife of folk legend Woody Guthrie who lost his battle with HD, the Society works tirelessly to provide the family services, education, advocacy and research to provide help for toda

y, hope for tomorrow to the more than 30,000 people diagnosed with HD and the 250,000 at-risk in the United States. Notably, HDSA funds the Coalition for the Cure, a collaboration of 16 international researchers, as part of the HD Drug Pipeline, which develops potential therapies to treat and eventually cure HD; and HDSA also supports 21 Centers of Excellence at major medical facilities throughout the U.S., where people with HD and their families receive comprehensive medical, psychological and social services, in addition to physical and occupational therapy and genetic testing and counseling. The Society is comprised of 38 local chapters and affiliates across the country with its headquarters in New York City. Additional, HDSA hosts more than 140 support groups for people with HD< their families, caregivers and people at-risk, and is the premiere resource on Huntington's Disease and to get involved in HDSA, please visit www.hdsa.org or call 1-800-345-HDSA

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 individual's 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.

Planning for the future can help provide greater peace of mind and help protect your family through every stage of Hunti...
09/04/2026

Planning for the future can help provide greater peace of mind and help protect your family through every stage of Huntington’s disease.

In this session from the 41st Annual HDSA Convention, attendees learn about important considerations related to estate planning and special needs trusts, including strategies that can help protect assets, preserve eligibility for certain public benefits, and ensure that a loved one’s needs and wishes are addressed over the long term.

Whether you are planning for yourself, a loved one, or the next generation, this session offers valuable information to help families prepare for the financial and legal considerations that can arise throughout the HD journey.

Please note: This presentation is intended for educational purposes only and should not be considered legal or financial advice. Individuals and families should consult with qualified professionals regarding their specific circumstances.

Visit: https://youtu.be/mkL_XrYAPdY to watch the full video.

Learn more about the Huntington’s Disease Society of America and find additional resources at HDSA.org.

HDSA is hosting a webinar featuring the Novartis clinical development team to share the latest updates on the INVEST-HD ...
09/03/2026

HDSA is hosting a webinar featuring the Novartis clinical development team to share the latest updates on the INVEST-HD Phase 3 trial evaluating votoplam for Huntington’s disease.

The first study sites are now open in North America, with more expected to follow around the world. The trial aims to include about 770 participants across more than 30 countries.

In this recorded session, Dr. Beth Borowsky and Dr. Harry Ramos provide an overview of the study, share where things stand today, and outline what to expect as the trial continues to roll out.

We invite you to submit your questions for the Novartis team when you register.

Questions from the community will be addressed during the webinar.

Visit: https://hdsa-org.zoom.us/webinar/register/2617749901893/WN_X5HpkIPfQxG-3ePjj0hF_A #/registration to learn more

Today, uniQure announced it has submitted a Biologics License Application, or BLA, to the FDA for AMT-130, an investigat...
09/02/2026

Today, uniQure announced it has submitted a Biologics License Application, or BLA, to the FDA for AMT-130, an investigational gene therapy for Huntington's disease. A BLA is the formal request a company files asking the FDA to review a treatment for approval. They also submitted an application to UK regulators.

This is a real milestone after a long road, and we know our community has followed every twist and turn of this program. While this application stands on promising data from a small number of people, the FDA still has to review everything carefully, and it will be some time before we know the outcome. HDSA will keep you posted as it unfolds.

Visit:https://hdsa.org/wp-content/uploads/2026/09/uniQure-Announces-Submission-of-Biologics-License-Application-for-Ifezuntirgene-Inilparvovec-AMT-130-in-Huntingtons-Disease.pdf for more information.

09/02/2026

HDSA is honoring Marjorie with the goal of helping HD families!
One of Marjorie's most important beliefs was that together we could find answers. This Founder's Day, a friend of the HDSA mission has pledged to match dollar for dollar - up to $20,000 - any donation to HDSA on Founder's Day! This means every dollar you donate on Founder's Day will have DOUBLE the impact for HD families.

Please help us achieve our goal and seize this amazing matching gift opportunity! Please join us on September 18th for a very special 24-hour day of giving dedicated to Marjorie Guthrie, her legacy, and the movement she inspired that led to the establishment of HDSA.

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

The HDSA Research Forum provides the Huntington’s disease community with an overview of the evolving HD research landsca...
09/01/2026

The HDSA Research Forum provides the Huntington’s disease community with an overview of the evolving HD research landscape and a closer look at the road ahead for clinical trials.

Recorded at the 41st Annual HDSA Convention in Phoenix, Arizona, this session features members of HDSA’s Clinical Trial Readiness Taskforce, who discuss the current roadmap of Huntington’s disease clinical trials, emerging opportunities in the research pipeline, and the work underway to help ensure the HD community is prepared for future studies and potential therapies.

The conversation also highlights the importance of clinical trial readiness, education, and community engagement as research continues to advance.

Visit: https://youtu.be/1gS3e9ahF3k to watch the full video.

Learn more about HDSA’s research programs, clinical trials, and resources at HDSA.org/research.

Help for Today. Hope for Tomorrow.

The HDSA National Youth Alliance (NYA) Talent Show is always a special Convention tradition—bringing together creativity...
08/28/2026

The HDSA National Youth Alliance (NYA) Talent Show is always a special Convention tradition—bringing together creativity, connection, and plenty of fun from across the HD community.

Recorded at the 41st Annual HDSA Convention, this event showcases the talents and personalities of members of HDSA’s National Youth Alliance while celebrating the friendships and sense of community that make the NYA so special.

From performances to memorable moments, the Talent Show is a chance for young people impacted by Huntington’s disease to come together, support one another, and shine.

Learn more about the HDSA National Youth Alliance and resources for young people impacted by Huntington’s disease at HDSA.org/nya.

Visit: https://youtu.be/WNaSWbo_6HQ to watch the full video

https://youtu.be/k97ouSmlIh4Planning for the future can feel overwhelming, but understanding available financial resourc...
08/26/2026

https://youtu.be/k97ouSmlIh4
Planning for the future can feel overwhelming, but understanding available financial resources can make a difference.

In this session from the 41st Annual HDSA Convention, learn more about AZ ABLE (Achieving a Better Life Experience) and how ABLE accounts can help eligible individuals with disabilities save for qualified expenses while maintaining access to important public benefits.

Watch now to learn how ABLE accounts may support greater financial independence and long-term planning for individuals and families impacted by Huntington’s disease.

Visit: https://youtu.be/k97ouSmlIh4 to watch the full video

HD research needs your voice. Federal policies can have a lasting impact on the future of Huntington’s disease research....
08/21/2026

HD research needs your voice.

Federal policies can have a lasting impact on the future of Huntington’s disease research. That’s why HDSA is asking advocates to contact their U.S. House Representative and urge them to co-sponsor the bipartisan Congressional Review Act resolution led by Representatives Jake Auchincloss and Brian Fitzpatrick.

Together, we can make our voices heard.

Visit: https://www.votervoice.net/mobile/HDSA/Campaigns/139090/Respond to contact your Representative and take action to support HD research. 💙

The energy. The connection. The moments we’ll never forget. 💙 Relive the highlights from the Huntington’s Disease Societ...
08/18/2026

The energy. The connection. The moments we’ll never forget. 💙

Relive the highlights from the Huntington’s Disease Society of America’s 41st Annual Convention, held June 25–27, 2026, in Phoenix, Arizona! For three unforgettable days, the HD community came together from across the country to learn, connect, celebrate, and look toward the future. From exciting research updates and powerful educational sessions to inspiring stories, new friendships, celebrations, and plenty of memorable moments, the Convention showcased the incredible strength and spirit of our community.

Thank you to every family, advocate, volunteer, researcher, healthcare professional, speaker, sponsor, and supporter who helped make the 41st Annual HDSA Convention so special. One mission. One community. One HDSA. And the journey continues… We’ll see you in Philadelphia for the 42nd Annual HDSA Convention in 2027! Learn more at HDSA.org.

Visit: https://youtu.be/Z7RawwDmC_s?si=CaNam-4ynxXN5_E0 to watch the full video.

In Part 2 of Grey Area, the HDSA Podcast team continues the conversation with researchers Chris Kay, PhD, and Jessica Da...
08/14/2026

In Part 2 of Grey Area, the HDSA Podcast team continues the conversation with researchers Chris Kay, PhD, and Jessica Dawson, PhD, diving even deeper into the complexities of Huntington’s disease genetics.

The conversation explores why HD may be diagnosed more often today, what researchers are learning about loss-of-interruption variants, and why a CAG repeat number may not always tell the full story. Chris and Jessica also explain the limitations of current diagnostic testing, the role of genetic counselors and HD specialists, and ongoing research aimed at better understanding sequence variants in people with reduced penetrance CAG repeats.

The group also discusses research-based testing underway through the HD Biobank at the University of British Columbia and why continued research could help improve how these complex genetic results are understood in the future.

Join Tam, Allison, Marianne, Chris, and Jessica as they continue navigating the fascinating—and sometimes unexpected—grey areas of Huntington’s disease genetics.

Visit: https://www.buzzsprout.com/2092862/episodes/19632894 to listen to the full episode!

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