The Utah chapter of the Huntington’s Disease Society of America will be hosting its annual Team Hope Walk with a twist this year.
Due to the COVID-19 pandemic the organization is transitioning into a virtual format, welcoming people to walk wherever they would prefer for the fundraising event on Oct. 17.
According to the HDSA website, Huntington’s disease is a fatal genetic disorder causing the breakdown of cells in the brain as well as the deterioration of a person’s physical and mental abilities. There are currently 41,000 symptomatic Americans with more than 200,000 at risk of inheriting the disease.
For Morgan Pratt, the Utah chapter president, Huntington’s disease is something she has been dealing with throughout her life. Pratt’s mother passed away due to complications from the disease and Pratt was then diagnosed with it about two years ago at the age of 23.
“We are on the cusp of finding a cure,” Pratt said. “They do know what causes Huntington’s disease so I truly believe I am not going to die from Huntington’s disease, it’s just going to be a little blip in my lifetime.”
For Pratt and the Utah chapter, the Team Hope Walk raised $40,000 last year in hail and inclement weather. This year Pratt said the goal is to raise $60,000 through the virtual event.
As a result of the COVID-19 pandemic, the organization’s fundraising efforts have taken a big hit and the same has been happening at the national level. Pratt said the national organization had to lay off half of its staff, but she added that the struggles have brought the Huntington’s disease community closer together.
“We all are quarantined and going through the same sad and depressing emotions, but when you go through hard times together your community grows stronger,” Pratt said.
According to Pratt, an estimated 300 people in the state of Utah have Huntington’s disease. With the community being so small and tight knit, Pratt brought up how important events like the Team Hope Walk are for people with Huntington’s disease.
At one virtual fundraiser Pratt attended recently, one of the women in attendance mentioned that it was the first time she had smiled in a month.
“That truly gave me the chills, that was so fun to connect with her, have fun and shake off those COVID blues,” Pratt said. “The Hope Walk is such a great time to see families and connect with everybody in the community. It’s a great time for us.”
Pratt also said that the organization is in dire need of donations right now as scientists work to find a cure for Huntington’s disease.
While putting together events and fundraisers, the Utah HDSA offers monthly support groups for those impacted by Huntington’s disease, and anyone can join.
While the diagnosis of Huntington’s disease is considered fatal, Pratt found that her diagnosis gave her a new outlook on life, something she feels lucky to have realized at the age of 23.
“I realized in that moment that