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By Matthew Santamaria (msantamaria@hdsa.org)

Twenty-five-year-old Morgan Pratt resides in Taylorsville, Utah which is close to Salt Lake City. On June 22nd, 2018, Morgan tested positive for the gene that causes Huntington’s disease (HD).

HD 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 usually during their prime working years and has no cure.

Her mother was a school teacher and a mother of two children including Morgan. She was diagnosed at thirty-years-old with the gene that causes HD. According to Morgan, she did not know her mother without the disease but she was described as a ray of sunshine and always brought a light to different situations which made her an amazing teacher.

When she was only fourteen-years-old, her mother passed away at the age of forty-three-years-old due to complications from HD. When Morgan visits her mother, she sprinkles diet Coke on the grave because she loved diet Coke.

Morgan was not surprised by her diagnosis because she noticed symptoms of the disease before being tested. The symptoms of Huntington’s disease are described as having ALS, Parkinson’s and Alzheimer’s – simultaneously.

Symptoms include personality changes, mood swings, depression, impaired judgement, involuntary movements, slurred speech, difficulty in swallowing, and significant weight loss.

Morgan is taking the disease head on as she knows this is a different time period compared to when her mother was diagnosed. She is part of the SIGNAL Trial, an investigational approach to early treatment of HD. This is designed for people early in their progression or not yet diagnosed. Morgan is learning more about what is available as she is focusing on getting into a trial that will one day find a solution to cure HD.

For more information about HD Trialfinder, click here

Morgan finds ways to escape from reality for a little while to cope with HD. She accomplishes this through painting and meditating. This allows Morgan to fully express herself as it gives her an opportunity to clear her mind.

Morgan and her family continue to be active in the HD Community. Morgan is HDSA’s Utah Chapter President and her father, Brian, is the Vice President. Morgan took over the reins from Becky Blaine, who took Morgan under her wing prior to becoming Chapter President.

With Morgan’s experience in news and radio, the family is looking expand the reach of the Chapter. For HD Awareness month in May of 2019, Brian and Becky were interviewed by ABC 4 News as they discussed family history with the disease and how to get involved with HDSA’s Utah Chapter.

To watch the interview, click here

Morgan was also interviewed by KSL NewsRadio, where she served as the Talk Radio Producer. In the interview, she was educating listeners about what HD is, support groups available, and HD Education Days in Utah.

To watch Morgan’s radio interview, click here

Morgan and the Utah Chapter have plenty of events coming up including the Urban Arts Festival and the Utah Team Hope Walk. Both events will be taking place in Salt Lake City.

There will be more events taking place but you have to stay tuned as Morgan will make sure everybody knows about it.

For more information about the events, click here

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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 usually during their prime working years and has no cure. Each child of a parent with HD has a 50/50 chance of inheriting the faulty gene that causes Huntington’s disease. Today, there are approximately 30,000 symptomatic Americans and more than 200,000 at-risk of inheriting the disease. The symptoms of Huntington’s disease are described as having ALS, Parkinson’s and Alzheimer’s – simultaneously.

The Huntington’s Disease Society of America is the premier nonprofit organization dedicated to improving the lives of everyone affected by HD. From community services and education to advocacy and research, HDSA is the world’s leader in providing help for today and hope for tomorrow for people with HD and their families.

To learn more about Huntington’s disease and the work of the Huntington’s Disease Society of America, visit www.HDSA.org or call 1(800)345-HDSA.

This is a story featuring a personal experience with Huntington’s disease. If you would like to have your story told please contact Matthew Santamaria at msantamaria@hdsa.org