The gene mutation starts as a benefit that enhances early brain development by contributing to larger brain size and higher IQ. However, it ultimately becomes a devastating and cruel liability, disrupting mobility and diminishing cognitive ability. Today, there are approximately 41,000 symptomatic Americans and more than 200,000 at risk of inheriting Huntington’s disease - a disease comfortable in crossing all ethnic and racial boundaries and affecting males and females equally.

The Huntingtons’s Disease Society of America is a nonprofit organization dedicated to improving the lives of those affected with HD. Marjorie Guthrie, the wife of legendary folk singer Woody Guthrie, founded the organization in 1967. Woody Guthrie died from HD complications when he was only 55 years old.

 The Utah Chapter of HDSA hosted its fourth annual pickleball tournament in Bluffdale on Saturday, May 3 at Wardle Fields Regional Park. The event brought together the community while raising vital funds to support HDSA’s mission of enhancing the lives of those affected by HD and their families.

Ryan Porter and Haley Gustavson won first place in the mixed team tournament, defeating 13 other teams. They received Stanley tumblers, sunglasses and AirTag tracking devices, which were generously donated by the Vox Marketing Group.

Hale Center Theatre and Vox Marketing Group donated raffle prizes, including tickets to upcoming performances and fun summer items. Their contributions were essential in supporting the HD Utah chapter and enhancing the event which supports research and advocacy for individuals suffering from this challenging disease.

A progressive neurological disorder, HD is caused by a genetic mutation in the HTT gene. This gene provides the instructions for creating the huntingtin protein, which is essential for normal brain development and function. The gene mutation leads to the deterioration of nerve cells in the brain. The condition primarily impacts movement, cognitive abilities and emotional function. Memphis Neurology, a care center in Germantown, Tennessee specializing in neurodegenerative diseases, suggests HD symptoms are quite accurately described as having Amyotrophic lateral sclerosis (ALS), Parkinson’s and Alzheimer’s — at the same time.

Most individuals typically begin to show symptoms of HD between the ages of 30 and 50. However, the disease can also affect children and young adults in a form known as juvenile HD. One of the most concerning aspects of HD is that each child of a parent with the disease has a 50% chance of inheriting the faulty HTT gene.

“Huntington’s Disease runs in my husband’s family. His father died of the disease,”  Huntington’s Disease Society Utah Chapter Vice President Cortnee Query said. “My husband was diagnosed three years ago. We have four daughters and now realize they are 50% at risk of eventually being diagnosed with the disease. There isn’t much we can do to change that fact, but we can raise money, participate in HD studies and contribute to finding a cure or at least some kind of help for the disease in order to have a more positive outcome in the future.”

The most devastating effects of Huntington’s disease are the progressive loss of motor control and cognitive function and the development of severe psychiatric issues, which significantly impact a person’s ability to live independently and engage in daily life. 

While there is no cure for HD and its progression cannot be slowed, healthcare providers can prescribe medications to help alleviate specific symptoms such as unusual physical movements, hallucinations, delusional thoughts, depression and anxiety.

According to HDSA, research studies indicate that exercise can help reduce symptoms and enhance the functioning of individuals with HD. It is recommended that individuals should engage in aerobic activities for at least 150 minutes each week. Walking is suggested as a beneficial aerobic exercise and is still possible to perform for the individual in the middle stage of HD.  Additionally, incorporating strength-maintaining activities is advised as individuals tend to become weaker during this stage of the disease.

“For someone just diagnosed with HD, I think one of the most important things to do is to find a community of people that understands the disease,” Query said.  “Also, make sure you take care of yourself by living a healthy lifestyle, including eating a healthy diet and exercising daily. My husband will pass sooner than we’d hoped, and also, there’s the guilt of having four children who could possibly have it. It’s great to know there are others who I can reach out to who understand the challenges that come with HD.”

President of the HDSA’s local Utah Chapter, JorJa Mattson, invites everyone to participate in the upcoming and largest HD fundraising event of the year: the Team Hope Walk. This inspiring and empowering annual fundraising walk unites people across the country who are affected by HD. This year, the event will be held at Veterans Memorial Park in West Jordan on Saturday, Sept. 27.

For more information about the Team Hope Walk visit https://utah.hdsa.org/events/2025-team-hope-5k-walk-fun-run-utah.  

A local Team Hope Walk sponsorship at any level is an excellent opportunity to support a great cause and to take advantage of a wonderful marketing opportunity. Contact Cortnee Query,  [email protected] for more information about becoming a sponsor. 

For more information about the Huntington’s Disease Society of America Utah Chapter visit: 

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Huntington Disease Society of America Helpline
800-345-4372λ