By Curt Gresseth
SALT LAKE CITY — While the global coronavirus pandemic has put lives everywhere on hold, a Utah woman is pressing forward to find a cure for her terminal disease.
Huntington’s Disease is a fatal genetic disorder that causes the progressive breakdown of brain nerve cells. It deteriorates a person’s physical and mental abilities usually during their prime working years and has no cure.
May is Huntington’s Disease Awareness Month.
There are about 41,000 symptomatic Americans today and more than 200,000 at-risk of inheriting the disease.
Morgan Pratt, the Utah chapter president for the Huntington’s Disease Society of America, joins Boyd Matheson on Inside Sources to discuss the terminal disease and how listeners can help by donating.
While Pratt is diagnosed with the disease, and while fighting for her life, she is also fighting for a cure.
Overview of Huntington's disease
“Tell us just a little bit about [Huntington’s Disease]?” Boyd asked.
“I was diagnosed in 2018. As you lose your movement abilities, you also lose your personality. A lot of people slowly turn into vegetables. . . Their personality changes so much, you don’t recognize the person as they age,” Pratt said. “It’s really a horrible disease. There is often a lot of intergenerational domestic violence and that’s because of the disease altering your behavior.”
“Part of what you’re doing is making sure people become aware of this,” Boyd said. “A lot of organizations have had to cancel events or fundraising activities. You’re still working with your fellow Huntington Disease folks here in state of Utah. How can people get involved?”
Pratt said the best way to become involved or to donate is to go to the website or the Utah chapter’s Facebook page.
“We actually have a lot of events coming up later in the year that we’d still like to host. Whether that’s a virtual event or not, we don’t know,” Pratt said.
Finding a cure
“Morgan, you’re one of the great champions of this, with incredible passion and determination. I know you’ve been involved in clinical trials and other things to move it all forward. Give us a quick snapshot. Where are things right now?” Boyd asked.
“Now is the time that scientists are on the cusp of finding a cure,” Pratt said. “We just need to get enough donations and enough research money to those scientists so they are able to find a cure.
“Within the next 10 or 15 years, we will hopefully be able to cure this horrible disease,” she said. “We will be able to alleviate a lot of the horrible symptoms that really hollow out people.”
Pratt said she just finished an 18-month-long clinical trial for Huntington’s Disease.
“I was very lucky to be part of that. We can’t do that research without your donations,” Pratt said.
She urged listeners to visit the website and donate to help find a cure.