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.

04/29/2026

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

With, incredible workshops, world-renowned presenters, and the latest in Research - the HDSA Convention is an unforgettable experience.

You can secure your spot today by visiting: https://hdsa.org/about-hdsa/annual-convention/

04/24/2026

As National Volunteer Week comes to a close, hear from HDSA President and CEO Amy Gray as she reflects on the profound impact that our wonderful HDSA Volunteers make on a daily basis.

A special thank you to all of our dedicated our volunteers, and everyone who joined in on the celebration this week!

Check back throughout the month as we continue to highlight, and celebrate the heroes of our community! 💙💪

Join us in Phoenix, Arizona for the 41st Annual   from June 25-27!You can secure your spot today by visiting: https://hd...
04/17/2026

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

You can secure your spot today by visiting: https://hdsa.org/about-hdsa/annual-convention/

Featuring, incredible workshops, world-renowned presenters, and the latest in Research - the annual HDSA Convention is an unforgettable experience.

04/13/2026

There is still time to take action as part of HDSA’s Day of Action.

Every call and every email helps strengthen the voice of the Huntington’s disease community. Visit HDSA.org/HDdayofaction and take action before the day ends.

Have you taken action yet? It only takes a few minutes to help make sure Congress hears from the Huntington’s disease co...
04/13/2026

Have you taken action yet?

It only takes a few minutes to help make sure Congress hears from the Huntington’s disease community.

Call, email, and take action now at HDSA.org/HDdayofaction

04/13/2026

Today is HDSA’s Day of Action.

Families impacted by Huntington’s disease need to be heard, and today we are coming together to raise our collective voice.

Take action now:
Call your Member of Congress
Send an email
Visit HDSA.org/HDdayofaction

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.

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