NJ residents can help in the fight against ALS

Would you like to help refine and improve the way amyotrophic lateral sclerosis (ALS) and other neurological diseases are diagnosed and treated?

An organization called EverythingALS is looking for volunteers living in New Jersey to help in the fight against ALS, also commonly called Lou Gehrig’s disease, a condition that results in a progressive loss of the motor neurons that control voluntary muscles.

Indu Navar, who lost her husband to ALS in 2019, said there is currently no standardized diagnosis for this disease, so she founded EverythingALS with the goal of using artificial intelligence and technology innovations to identify and measure the progression of ALS and improve treatment options.

Record your own voice

Navar said in an ongoing study, volunteers from all over the world who are healthy, those who have a history of ALS in their family, and individuals already struggling with neurological symptoms of the disease, read different passages and record themselves at home once a month for a period of time.

“From that AI and machine learning is applied, where we will be able to see the small, minute changes that are happening in certain words and certain syllables,” she said.

She noted neurological changes in the brain are identifiable in the voice and speech “so what we’re doing is we’re studying psychologically how people are changing through the disease, before it becomes symptomatic.”

Navar said ALS is not a disease of the elderly.

"We have people in their 20s, 30s, and I think the youngest is an 8-year-old. We have many teenagers.”

Better diagnosis and treatment

Navar said the idea here is to better understand, track and ultimately treat ALS.

“We are really looking at this as what we call digital biomarkers, that’s exactly what we are trying to achieve.”

To learn how to become a part of the study, visit everythingals.org and click on the research tab.

David Matthau is a reporter for New Jersey 101.5. You can reach him at david.matthau@townsquaremedia.com

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