BOULDER, Colo. — More than 5,000 Americans are diagnosed with amyotrophic lateral sclerosis (ALS) each year, and roughly 600 people are here in Colorado, according to the Rocky Mountain chapter of the ALS Association.
ALS, also known as Lou Gehrig’s Disease, is defined by the ALS Association as a progressive neurodegenerative disease that affects nerve cells in the brain and spinal cord. While there is no cure, Everything ALS, a California tech company, is using artificial intelligence (AI) in order to discover better diagnoses and treatments.
Participant Michael Robinson, 52, of Boulder says the study involves 15 minutes of his time once a month.
“I participate in the Everything ALS speech study. It records you, and you're videotaped while doing various exercises while recording your speech,” he said.
Robinson was diagnosed in 2015 at the age of 45.
“I have what's called limb onset,” he said. “When it starts in your legs and feet, it tends to have a little bit slower progression than when it starts in your speech.”
Robinson has been in a wheelchair for nearly six years now and says his condition will only going to get worse.
“ALS is terminal in 100% of patients. It’s just a matter of how long,” he explained. “ALS will completely paralyze pretty much every muscle in your body, including breathing muscles, muscles in your throat required to eat or sleep.”
Because there's still so much unknown with the disease, Robinson chose to participate in the Everything ALS speech study.
“We really need any opportunity to contribute data, to improve potential finding of ALS treatments or the potential diagnosing ALS earlier. I'm all for it,” said Indu Navar, founder and CEO of Everything ALS.
The company has created three studies since its inception. The first studies speech while the second looks at a person's ability to walk, talk, breathe and think. The third study will zero in on people who don't have ALS but are at high risk because they have the gene for it.
AI is being used in each study in order to better examine the data.
"We really look at the data and say, 'Okay, what are the features that we look at within speech, for example? Is it speaking rate, how well we understand them?” said Navar. “We can do a lot of predictive AI machine learning work instead of waiting for them to get there and then say, 'Oh yeah, now you have the disease.'”
The goal is to find a quicker way to diagnose and treat the disease in the future.
"I am hopeful. You're seeing a lot of progress in neurodegenerative disorders, multiple sclerosis, Parkinson’s disease, Alzheimer’s disease. So there's hope for a potential cure,” said Robinson.
Navar says around 1,400 people from across the U.S. are participating in the three ALS studies.
