Volunteer walks, talks to raise disease awareness

Laurie Travis remembers exactly how it started. In 2017, her husband, Blake, 54, had occasional, involuntary spasms in his pinkie finger. 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 Hunting- ton’s Disease Society of America as akin to having “ALS, Parkinson’s and Alz- heimer’s – simultaneously.”

Despite not having run in 12 years, she started by participating in the annual HOPE Walk, sponsored by the society’s Georgia chap- ter. 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 front lines of the Georgia chapter’s Team Hope Walk on Saturday 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.

COURTESY Laurie Travis started running, walking and educating people about Huntington’s disease when her husband was diagnosed in 2018.