LANSING, Mich. (WLNS) — One non-profit organization is using technological innovations and data science to support those grappling with amyotrophic lateral sclerosis, otherwise known as ALS.

EverythingALS was started by people like Lisa Deegan and Indu Navar.

They both know the impacts of ALS.

“I lost my husband to ALS and Lisa will tell her story; she lost her brother,” said Navar.

For Deegan, the only work she could think of to describe it was “traumatic.”

“It was really traumatic for our family. I can’t think of another word other than traumatic. It’s a very lonely disease because you don’t know where to go, there’s no playbook for it, it’s super expensive,” said Deegan.

So now, both women are a part of EverythingALS, using technological innovations and are hoping to speed up diagnosing this disease.

The study uses web-based software that records and collects audio and video data from people.

“How slurring is affected, how lip movement is affected, how eyebrows are effects. So we’re doing the same thing and now we’re kicking off for gait. We put sensors in people’s shoes.”

After collecting data, AI and machine learning algorithms are used to analyze facial and speech metrics, looking for changes, if any, over time.

According to the Mayo Clinic, ALS is a progressive disease in the nervous system, causing loss of muscle control over time.

ALS even affects muscles needed to move, eat, breathe and speak.

Currently, there is no cure for ALS.

Luckily, EverythingALS is offering its data to patients, caregivers, researchers and drug companies.

“We ask people to do it once a week,” said Navar.

“No matter what stage of the disease you have it if you’re healthy because we do need controls, people who don’t have ALS and anybody can jump on in and participate,” said Deegan.

The motivation for collecting data regarding ALS is for the sake of early detection and improved prognostic accuracy of ALS.

But Deegan and Navar need more people to get involved and do these data collection sessions.

Data collection can happen anywhere, and even you can give data.

“ALS doesn’t discriminate. It doesn’t know if you’re rich or you’re poor, it doesn’t know your zip code, it doesn’t know the color of your skin, and everybody can participate in our study,” said Deegan.

Anyone interested can use their phone, tablet, or computer to get involved.