In December of 2016, Valerie Geerer was doing her normal lunchtime walk with work colleagues when a friend noticed something off about her gait. “I remember she said, ‘Is there something the matter with your foot?’” the fifty-nine-year-old Stamford resident recalls. “I told her I felt fine. A month later I was tripping myself. It was ironic. Six months earlier, my husband Michael and I were climbing mountains in Utah. And suddenly I couldn’t walk without stumbling.”
Over the next four years, as her leg strength deteriorated, Val and Michael made the rounds of doctors, none of whom could come up with a satisfactory explanation. Because Val has Type 1 Diabetes, the first neurologist she saw assumed she had diabetic neuropathy. She knew he was wrong. “That doesn’t happen within six months. And I didn’t have the feeling of pins and needles in my feet. I needed to find another neurologist.” That led Val to a doctor in Greenwich, who treated her for chronic inflammatory demyelinating polyneuropathy (CIDP). “We did that treatment with infusions and although it helped the fatigue it never helped me get my strength back,” she said.
From there, Val sought a second opinion at Columbia Presbyterian in New York. “They did all these tests—EMGs, bloodwork, even a spinal tap. These didn’t identify any specific disease. It hadn’t progressed beyond my legs at that point.”
Beginning in 2020, she noticed she was having trouble with the fine motor skills in her hands, and in August she lost the strength in her arms. A month later, the doctors were able to give her a diagnosis of sporadic amyotrophic lateral sclerosis (ALS), a neurodegenerative disease that affects the motor neurons in the brain and spinal cord, eventually leading to full paralysis for which there is no cure. Life expectancy after the onset of symptoms is from two to five years.
For Val, the diagnosis was a relief. “Not that it’s a great diagnosis,” she says. “But at least I knew what to expect.”
Although she is confined to a motorized wheelchair, Val is still able to work from home four days a week with the help of dictation software. She and Michael still travel, which is her passion. She is also helping move the needle forward on ALS research as a participant in a groundbreaking study conducted by EverythingALS, a nonprofit organization founded by Indu Navar, whose husband, Peter Cohen, died of the disease in 2019. The study uses AI technology to gather physiological data on the speech patterns (vocal and facial expressions), gait movements (walking and climbing stairs) and breathing of people with ALS. Val first learned about the study through her local ALS support group.
“A friend told me about it, and I was like, ‘Sure, I’ll do it if it will help.’” Once a week, Val connects with an EverythingALS avatar that walks her through several tasks, including saying different words, repeating different phrases, and counting as high as she can in a single breath.
“I’m still in the OK range for breathing, but it’s not as good as it used to be,” she says. “It’s interesting to see how my results have changed over the course of time. I know my speech has definitely slowed since this started, and I have difficulty with certain words.” (EverythingALS has recently changed the protocol, so people only have to log in once a month.)
By gathering as much data as possible from participants at different stages of their illness, the study will provide biomarkers that will help make early detection easier and also track progression during the course of the disease, so the information can be used in clinical trials. “It’s a way to see the subtle changes that are happening,” says Navar. “Even though someone’s speech might not be impacted, the AI is seeing the change.”
For Navar, an electrical engineer with a master’s in computer science and a tech entrepreneur/investor who helped launch WedMD, Serus and other ventures, the motivation to improve diagnostic tools for ALS is personal. Her husband died a year after he was diagnosed and two and a half years after the onset of symptoms. “The hardest part was the waiting,” she recalls. “We’d go to doctors, and they’d say come back in eight months and we’ll see where we are. Wait and see on the one hand is a good thing—we thought maybe it’s not so bad. On the other hand, hope is not a strategy. And every part of our background was screaming this is wrong, this is wrong.”
Since it launched in 2020, under the auspices of the Peter Cohen Foundation, the EverythingALS research study has enrolled nearly 1,000 participants. The project is free and open to anyone in the U.S. eighteen and older, those with ALS and those without. If Navar has her way, one day preventive care for neurodegenerative diseases will be as commonplace as doing blood work for diabetes and cholesterol.
“Going through the experience of losing someone you love to ALS is a nightmare,” she says. “I don’t want to see others go through what I experienced: no hope, no cure. By creating EverythingALS I wanted to give patients an outlet where they can be proactive about their situation while also getting answers and advice from professionals.”
For information about the study and EverythingALS, visit everythingals.org.