Back in 2014, millions of people poured icy water over their heads to spread ALS awareness and support research for the devastating neurodegenerative disease.
Now tech developers want to hear your voices.
Brian Andre has been living with ALS for six years.
“On average they only give you 2 to 5 years of life after diagnosis and some progress very quickly,” he said. “I’m really in a very small percentage of patients who see little or no progression. … My weakness is in my left side, left leg and arm. So it throws my gait off.”
Andre cannot be part of clinical trials.
“I can’t actually be in clinical trials because almost all clinical trials rule you out as a subject if you’d had the disease for two years,” he said.
But he can lend his voice.
Once a week, the 64-year-old clicks through a series of vocal exercises and answers questions about his fine and gross motor skills.
His voice strength, facial movements and breathing — functions often weakened during the course of the disease — are all recorded then evaluated through an algorithm in development by Everything ALS, an organization devoted to bridging technology with patient care and research.
Indu Navar is with the founder.
“Speech is a very early indicator in a lot of diseases,” Navar said. “And even when we don’t know that speech is changing, the machine learning and artificial intelligence is actually telling us there is a change in certain metrics.”
For Navar, the project is deeply personal.
“Unfortunately, I lost my dear husband to this disease,” she said.
It took her husband Peter Cohen two-and-a-half years to get a diagnosis, even though he and his wife sought the advice of doctors at the first signs of trouble.
“Even though we went very early, they said you are so early come back in eight months and we’ll see how much you degraded,” she said. “That did not sit well with me.”
Ultimately, Navar hopes the algorithm and voice data will not only help doctors determine if a drug or therapy is working, but she also hopes it will serve as a tool to diagnose patients much faster.
“Think of it like we are finding neurology today at Stage 4 cancer. Today we’re diagnosing ALS more like 60 to 80 percent of the motor neurons are dead,” she said. “So that means we need to be catching it when less than 10 percent is dead. I work with my heart because I never had so much purpose in my life.”
Brian Andre Lori, feels the same way.
“Every day you wake up and you’re like, ‘I hope there’s no progression. I hope nothing changes,’” she said. “If not for Brian, obviously for the next generation. It’s super important we continue to move the ball forward. Anything we throw at this disease the better.”
The citizen driven research project is not just for ALS patients, otherwise healthy people can lend their voices to the cause as controls for the study. Everything ALS plans to ultimately share their findings with thousands of researchers around the world in an effort to advance the science faster.
He study is a collaboration with MIT, IBM Research, Mass General Hospital and Harvard
More information at EverythingALS
From EverythingALS: “Our IRB approved study is motivated by the need for early detection and improved prognostic accuracy of ALS using advanced computational technology and speech data (audio, video). By participating in this study, you will contribute to a growing large ALS dataset and further advance current knowledge relating to the decline in speech due to ALS while also improving the performance of this technology.”