For Indu Navar and Lisa Deegan – co-founders of Los Altos-based nonprofit EverythingALS – amyotrophic lateral sclerosis, also known as Lou Gehrig’s disease, is personal.
Both women have lost family members to ALS, which inspired them to launch the foundation last year to honor the legacies of their loved ones and prevent others with ALS from suffering the same outcomes. The Los Altos residents not only hope to accelerate treatments, but also the time frame for diagnosis of the disease.
Despite multiple ALS symptoms, Navar said her husband, Peter, had to wait two years before being officially diagnosed in 2018. The process of being diagnosed entailed a prolonged method of eliminating other possible diseases through a litany of tests before being tested directly for ALS, she said.
As a software tech entrepreneur, Navar resolved to create a more efficient method to diagnose the disease.
“The problem is that people don’t get diagnosed early,” she said, “and today, we have so many other technologies we can use to diagnose early, but they have not been innovated or they haven’t come to the market yet.”
The lifespan for a typical patient with ALS is about two to five years after their first symptoms, according to Navar, and 18 months to two years of that time is spent waiting for a diagnosis. Analogizing the process to cancer, she said, “We have no ways of diagnosing it early. Everybody’s in stage 4, and we’re trying to cure stage 4 cancer when we all know we can only cure stage 0, stage 1 or stage 2 cancer today.”
Navar’s proposed solution is to look at biomarkers indicating an earlier diagnosis of ALS.
After Navar’s husband died in 2019, her vision solidified: “I will not let my husband, the love of my life, be a number in this disease. He’s not going to go down as, ‘Yes, he’s passed away from the disease.’ He’s going to go down as, ‘Yes, he’s the force that changed the face
of this disease.’”
‘A family disease’
Co-founder Deegan’s brother, John, was diagnosed with ALS in 2014 and died from it four years later.
“Getting diagnosed took a long time, and once he was diagnosed, the doctors at Stanford instructed my brother to go home, get your affairs in order and make yourself comfortable,” she recalled.
Leaving her brother with such limited options frustrated him, Deegan and others in his life.
“ALS is a family disease,” she said. “It affects the family, it affects the community – all the friends that are surrounded by this patient – because it is so devastating.”
Meeting Navar in 2019 sparked Deegan’s interest in preventing others from suffering in the same way her family had, she said. Despite having what she described as PTSD from her experience with ALS, Deegan joined forces with Navar, and the pair began focusing on the gaps among researchers, doctors and patients in hopes of helping the ALS community.
With two active studies, EverythingALS has been busy pursuing its mission to uncover digital biomarkers. The first study, Advancing the Diagnosis and Prognosis of ALS, combines speech audio and video data with artificial intelligence and machine learning to predict the progression and minor degradation of ALS. Navar and Deegan said the U.S. Food and Drug Administration-approved project is currently the world’s largest ALS study, with more than 650 participants.
“And we want to get to 1,000,” Navar added, “to show that this can be done in a very fast manner while also being cost effective.”
The second study, Search Engine Interactions, uses participants’ unique digital footprints – how they use the keyboard and mouse, how they spell, what their search habits are, etc. – to predict ALS symptoms. EverythingALS even shares the
data with participants so that they can track their own progression, according to the
Merging technology with science
The process for expediting the ALS diagnosis has been hindered by lack of data, and to add insult to injury, there are currently only two FDA-approved drugs for ALS patients, the co-founders said. With ever-evolving technology, “it’s a perfect time to merge technology with science,” Navar noted.
Already published four times at Interspeech (an international science and tech conference), the work of the EverythingALS team has identified metrics associated with speech as a possible indicator of ALS.
“We can actually start diagnosing it early, since we have the speech and facial metrics to predict ALS progression,” said Navar, who added that EverythingALS plans to continue its study of motor degradation by tracking walking patterns next.
In addition to the studies, the nonprofit offers monthly educational and collaborative events where they bring in highly sought-after expert speakers for the ALS community.
“It’s unbelievable that we pulled this together, because these people’s time is so valuable, and experts love to share their knowledge with our community,” Deegan said.
Between hope for treatment, data on patient progression, educational webinars and podcasts to share personal stories, EverythingALS is broadening the resources that Deegan and Navar wish they had had access to during their ALS journeys.
“ALS doesn’t discriminate – any age, any race, whether you’re rich or poor, it doesn’t matter,” Deegan said. “It’s a very expensive disease, and at the end of the day, a lot of people decide to die because they don’t want to burden their family. It’s horrible. It’s like having a train run over you. We want to change that.”
EverythingALS seeks additional participants for the speech data study, the co-founders noted. Those 18 or older are eligible, regardless of how their voice has been affected by ALS, and the study requires approximately 20 minutes of online audio and voice recordings per week.
For more information on EverythingALS and its active studies, visit everythingals.org.
Welcome to the discussion.
Keep it Courteous. Be respectful, truthful, and use no threatening or hateful language.
Be Proactive. Use the 'Report' link on each comment to let us know of abusive posts.
Share with Us. We'd love to hear eyewitness accounts and the history behind a news event.
Read our full comments policy: losaltosonline.com/comments