Laurie Travis remembers exactly how it started. In 2017, her husband, Blake, 54, had occasional, involuntary spasms in his pinkie. The movement progressed across his hand, then into his arm. Soon he exhibited memory issues.
“Then his speech started to sound slurred,” Travis said. “We knew something was wrong.”
In 2018, genetic tests for Huntington’s disease were positive.
“I had no knowledge of it prior to that,” said the Cumming resident. “That’s when I started to dig deeper and get more information. I learned that most people know if their family has HD, but we did not.”
Her husband’s diagnosis energized Travis to keep other people from being blindsided by the illness, described by the Huntington’s Disease Society of America as akin to having “ALS, Parkinson’s and Alzheimer’s – simultaneously.”
Despite not having run in 12 years, she started by participating in the annual HOPE Walk sponsored by the society’s Georgia chapter. In 2019, she was asked to volunteer with the state group.
“From there, I got more and more involved because the problem is so close to my heart,” she said.
Running to raise awareness has now become a focal point.
“Last year, I raised money by running the New York marathon,” she said. “When I get the opportunity, I run for a purpose.”
Travis also spends time educating others about Huntington’s.
“A lot of the work is getting the word out,” she said. “A lot of people have not even heard of this rare genetic neurological disorder that can even affect children.”
Travis will share her story and insights as part of a panel at the 37th Annual HDSA convention at the Marriott Marquis downtown from June 9 to 11. The topic will be “what I wish I knew in the beginning.”
“It’s the first time I’ve done this, and I’m a little nervous,” she said. “But I want to share a lot of things I wish I’d understood, like long-term health care, Social Security disability and ways to help your loved one keep their independence and dignity.”
Before the convention, Travis will be on the frontlines of the Georgia chapter’s Team Hope Walk on May 15 at Mason Mill Park.
“It’s not a timed event; it’s a fun walk at whatever ability a person has to walk,” she said. “It’s more about getting together people who have a common interest.”
Information about the walk and the convention are online at hdsa.org.
Who’s doing good? Each week, we write about a deserving individual, charity events such as fun-runs, volunteer projects and other community gatherings that benefit a good cause. To suggest an event or person for us to cover, contact us at ajc.doinggood@gmail.com.
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