SCRANTON, LACKAWANNA COUNTY— New research is underway to better understand and treat ALS, a difficult disease to diagnose with no known cure. ALS patient Paul Miller of Scranton is one of the participants.
The progressive neurodegenerative disease ALS affects as many as 30,000 Americans. There is no known cure despite efforts to better understand it and treat it.
ALS is a puzzling disease for certain with so much needing to be learned about it.
One way we have tried to understand ALS is through a groundbreaking research project that’s getting help from a Scranton man who’s been living with ALS for a decade.
A motorized, customized wheelchair helps get Paul Miller to something he’s been doing routinely since 2021. Once a week, he pulls up to his computer and takes part in a project gauging his ability to speak.
With the use of artificial intelligence, each ten-minute session tracks and records Miller’s speech.
“It means a lot for me to be able to participate in something I’m passionate about,” Miller told Eyewitness News.
“We can actually see the changes that happen and the progression of the disease and we can use these mechanisms in the trials so that we can actually say these are the algorithms that can detect the progression of the disease,” said Indu Navar, the Founder and CEO of EverythingALS.
The organization’s goal is to use that data to support efforts ranging from providing ALS care to finding a potential cure.
“We’re already finding, you know, changes in the speech as one of the indicators of progression and my wish is that this gets accepted by FDA as a secondary biomarker that can be used in the clinical trials,” Navar explained.
Navar said Miller brings particular value to the study. He’s one of only ten percent of patients who’ve battled ALS for at least 10 years.
“Anybody who is actually in the outlier who are living longer need to be studied, need to be understood,” Navar said.
Miller’s wife is encouraged by the organization and its speech research.
“It’s great. It’s a great resource. It’s a great thing, you know, anything that they can do for ALS is amazing,” said Eileen Miller, Paul’s Wife.
“Maybe down the road it will help somebody with ALS,” Miller stated.
Miller said while he doesn’t expect a cure for ALS anytime soon, he hopes the research helps detect the disease sooner.
He said it took 16 months for doctors to diagnose him.