Five thousand people in the U.S. are diagnosed with a neurological disease called ALS every year. Medical experts say it typically takes an average of two years to diagnose, but new research will likely make that timetable a lot shorter.
In 2019, Mark Weston and his wife, Kathleen, had their retirement all planned out.
"We were all set up for a sail off into the sunset and have a really fun retirement," Weston said. "We had, we bought a house on the coast of Maine several months earlier."
A week before the big move, he got a life-changing diagnosis.
"I got diagnosed with Amyotrophic lateral sclerosis, better known as ALS, better known as Lou Gehrig's disease," Weston said.
ALS is a progressive neurodegenerative disease that affects nerve cells in the brain and spinal cord.
"In the case of what I have, which is called limb onset ALS, you begin to lose the ability to do stuff like walk or stand up and sit down without assistance," Weston said. "Eventually, all the motor neurons fail, and you essentially become paralyzed and can no longer breathe."
There's no cure and no effective treatment as of yet. Weston wanted to contribute to research, so he asked to be a part of drug trials.
"And they said, 'Well, you're in a spot where you've had symptoms long enough that you're not that interesting to the drug investigators, to the sponsors of these experimental drugs,'" Weston recalled. "They want people who are more freshly symptomatic because you get better results."
He was still craving a sense of purpose.
"What am I going to do with my time?" Weston said. "I can't ride my horse anymore. I had to sell my motorcycle. I had to sell my bicycle. I can't even go hiking."
Weston says he was happy to learn of a research study that uses artificial intelligence to accurately document the progression of the disease. The hope is that it would help diagnose ALS earlier so people like Weston could be a part of drug trials.
"To me, it's like science fiction where they pinpoint different parts of your face and your musculature and your eye expressions," Weston said.
The nonprofit responsible for the study is EverythingALS. Indu Navar started it after losing her husband to ALS.
"Through that journey, I just realized that how behind we are in bringing, you know, technology and real innovation to these diseases, especially brain disease," Navar said.
The program uses sensors to track the degeneration of movement, speech and facial expressions over time. Participants are asked to do the 15-minute session once a month for five months.
"We measure the speech and video of people like the facial changes and gait changes, like how they move their balances and how they breathe and how they type, how they move their fingers," Navar said.
Navar says the research has been going great so far with 1,000 participants in only 14 months. She says she expects to put something in front of the FDA by the end of the year. What's really cool, is that she's using technology her husband created in the study.
"I really don't want him to be known as somebody who was lost to the disease," Navar said. "I want him to be known as somebody who solved, who helped solve the disease."
