ST. PETERSBURG, Fla. — A patient-focused nonprofit organization is using artificial intelligence to help analyze audio and video recordings of patients with ALS and those without the neurological disorder, to advance diagnosis and prognosis of the disease.
The goal of Everything ALS is to support people with ALS, from care to cure. Founder, Indu Navar lost her husband to ALS and now works to help bridge the gap between patients, research and technology.
One of the organization’s current research projects is a speech study.
“We are focusing on both prognostic markers, so we can actually bring good measurements during clinical trials, and also what we call diagnostic markers that can be used for early diagnosis,” Navar said.
Paul and Martha Beach are enrolled in the study. Paul, a successful businessman and active weekend warrior, was diagnosed with ALS in 2019.
“He was having a hard time buttoning his shirts and his ties, a little bit of difficulty writing and then felt clumsy,” Martha said of her husband’s early symptoms.
As a participant in the study, Paul uses his own voice to record words and phrases at least once a month. The virtual study also records facial movements.
Martha, an advanced registered nurse practitioner in the area of neuroscience, also records her voice as part of the study to allow researchers to compare speech patterns of people with ALS and those without the disease. She says Paul developed symptoms with his speech over the last six months.
“Initially, he had very little symptoms, as most people do, and the concern for us was how progressive, how rapid which people are unable to predict,” Martha said.
Using an eye-generated assistive device to communicate, Paul said he hopes participating in the study will help change those predictions.
“With the technology available now, precious time can be saved,” he said. “I want people to be able to be diagnosed earlier.”
The couple is also concentrating on helping other families through that diagnosis, by launching the ALS International Foundation.
“We are focused on care … the opportunity that we see is helping (patients) cope, psychological counseling and that ability to help everyone that’s been affected emotionally and psychologically,” Martha said.
Paul is also writing a book to give his personal perspective on how words have mattered.
“You can give someone hope or you can take it away from them very quickly in the way they say those words,” said Martha.
The Beachs say they hope to get their message out in several ways to help raise awareness.
“So much of our lives we take for granted,” said Paul. “Simple pleasures like a glass of wine or touching your lover’s face, I want everyone to relish these things.”
He said they are sharing their personal journey to help empower those impacted by ALS.
“He’s my hero,” Martha said. “He gives me strength.”
Melissa Eichman
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