Amyotrophic lateral sclerosis (sometimes called Lou Gherig’s disease, or ALS) affects around 15,000 Americans, with about 5,000 receiving a new diagnosis each year, according to the Centers for Disease Control and Prevention. The Mayo Clinic defines ALS as a disease of the nervous system that affects the brain’s ability to control the muscles, leading to paralysis and the eventual inability to perform essential tasks, like eating and breathing. ALS awareness-raising causes like the Ice Bucket Challenge have gained popularity in recent years, in part because of the disease’s urgency: data suggest that after symptoms appear, patients often have a life expectancy of two to five years.

At this time, while there is no cure for ALS, there is promising research into new ALS treatments. However, those treatments’ effectiveness depends on an individual’s early and accurate diagnosis.

To support research advancement, the EverythingALS Speech Project is an innovative study that aims to drive increased accuracy in ALS diagnoses and disease progression by analyzing two key patterns in patients’ communication: vocal and facial patterns. “Facial and vocal expressions are critical to helping develop an ALS-specific diagnosis and prognosis,” says Alan Taitz, PhD, research lead at the Peter Cohen Foundation—a 501(c)3 corporation under which Everything ALS resides. “By studying how the voice and facial expressions change as ALS progresses, we can help identify markers that could help in clinical trial for drug development and early diagnosis for ALS,” Taitz tells The Healthy @Reader’s Digest.

Taitz explains that currently, diagnosing ALS has been “a process of elimination and has no objective way to measure prognosis in the clinical trials. Scientists and medical professionals have not been able to develop a test to identify whether a person has ALS or how it’s progressing,” as Taitz says is possible with some other diseases, like cancer and diabetes. “By studying how the voice and facial expressions change as ALS progresses, we can help identify markers that could help in clinical trial for drug development and early diagnosis for ALS,” he says.

Gwen Petersen, 36, has been diagnosed with ALS and is one of the participants in the EverythingALS speech study. Here, Peterson shares her story—and why she decided to volunteer for the project—with The Healthy.

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Gwen’s story of ALS

By Gwen Petersen, as told to Charlotte Hilton Andersen

A small stumble: it’s the kind of thing that can, and does, happen to everyone on a pretty regular basis. But that day in 2016, I knew something was different. My left foot had been “scuffing” the ground a lot, leading to quite a few stumbles, trips and even falls. No matter how hard I tried to be conscious of it, it just kept happening. I didn’t know what was wrong, but I felt “off” enough to make an appointment with my doctor.

The first doctor I saw told me it was “all in my head” and diagnosed me with anxiety. Inside, I knew that wasn’t right. My balance and coordination were getting progressively worse; I was having more accidents than usual. And while that certainly caused me anxiety, I didn’t believe that anxiety was the root of the problem.

As I researched my symptoms online, I came across amyotrophic lateral sclerosis—

ALS?

That’s when the puzzle pieces started to fit together. At first, my husband refused to believe me. Who could blame him? ALS is a fatal disease with no cure.

I got a referral to a university hospital, where they ran a course of tests. I learned there is no single “ALS test,” so it’s mostly a diagnosis of exclusion. In 2018, after ruling all other possibilities out, I was diagnosed with this disease. That was 18 months after my first symptoms started.

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Finding a way to help ALS patients through research

My diagnosis was shocking. But helping others always gives me hope, and I wanted to find a way to use my experiences to keep doing that. So I decided one way I could help was to participate in research. I am deeply committed to helping the push toward disease-altering treatments and eventually a cure for ALS. In the three and a half years since my diagnosis, I have participated in over 40 ALS studies (including a current one for a promising experimental drug).

One that has been really powerful is the EverythingALS speech study. I first heard about it through my online ALS group and signed up immediately.

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Monitoring ALS through speech

The goal of the study is to identify and validate “biomarkers,” or measurable physical indicators, of ALS disease progression. The researchers noted that two communication patterns might serve as potential biomarkers of ALS: vocal and facial expressions. Because ALS affects the nerves that control the muscles, people’s speech and facial expressions deteriorate as we lose the ability to move those muscles. This means that our speech slows over time, and our speaking patterns become less consistent. (As Raquel Norel, PhD, research staff member at IBM Digital Health, told The Healthy: “As we are studying people’s voices and faces over time, our AI can track minute changes that might not be visible or measurable to the human ear or eye.” What exactly do the researchers keep an eye out for? “We look for subtle changes such as a change in speech pace or enunciation of words. Even small changes in the muscles can be revealing and help us to understand more about ALS and how it impacts the body,” Dr. Norel says.)

To monitor these changes, each week I sit in front of a computer with a camera and microphone. I read a series of phrases out loud and then describe pictures that are shown on the screen. The dashboard provides a summary of my results and analyzes changes from the previous week.

It’s been really interesting to see how I’ve changed and how different factors, like my level of fatigue or the time of day, influence the results. The goal of the research is to analyze the results of me and the other participants to validate biomarkers that may one day be able to predict the different stages of the disease.

In the long run, I hope it means people are diagnosed and start a treatment plan sooner. Early detection is a main key to optimizing the effectiveness of promising therapies. The EverythingALS Speech Study could be a real game changer, but more participants are needed to make the study goal attainable.

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Why I do this

Participating in this research, and other ALS studies like it, gives me a sense of hope and purpose. It gives me a reason to get up each morning and keep going—which, I won’t lie, can be really difficult some days.

This study has also helped me feel like I’m part of a community. My husband and my family are super proud of me and the work I’ve been doing. At the end of the day, this isn’t about saving myself, it’s about fighting for others. It’s about leaving a legacy of hope.

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