SAN FRANCISCO (CBS SF) – a Bay Area nonprofit dedicated to advancing research into an incurable – and fatal – nervous system disease is looking for 300 more people to participate in the largest research project to date by the end of this month want to participate on this topic disease.
EverythingALS has already recruited nearly 700 people this year for a national language study that aims to collect quantifiable data on some of the early symptoms of amyotrophic lateral sclerosis, also known as ALS or Lou Gehrig’s disease.
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Gehrig was a New York Yankees player who was diagnosed with the rare degenerative disease at the age of 36 and died shortly before his 38th birthday in 1941.
An estimated 30,000 Americans live with ALS, which causes widespread loss of muscle control as nerve cells in the brain and spinal cord are destroyed.
Early symptoms range from twitching, cramping, and weakness to difficulty chewing and slurred speech. Patients usually live no more than five years after the symptoms first appeared.
“With 1,000 participants, the largest group ever recruited to conduct a neurological assessment of people with ALS, we are reinventing the research platform using a patient-centered, citizen science approach to make things move 1,000 times faster,” said EverythingALS -Co-founder Indu Navar in a press release.
A smaller language study earlier this year gathered data that only recently led to the identification of breathing patterns and mouth movements that differ significantly between healthy individuals and those with ALS, including those who are presymptomatic.
EverythingALS now wants to have at least 1,000 participants in its so-called “Speech Bucket Challenge” on board by Thanksgiving, in the hope that the larger study will confirm the connection between ALS and language anomalies.
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As the muscles of the face lose their flexibility, it becomes more and more difficult to open your mouth wide enough and to make certain sounds with your tongue. The neck muscles also tighten, which limits the volume of air that must pass over the vocal cords in order for someone to speak.
The study is carried out remotely via web-based computer software that records and analyzes how fast and deep the participants are breathing and the volume of their voices when they speak into a microphone.
Anyone with an internet connection, webcam and microphone can take part in the project, which is open to people with known or suspected ALS as well as healthy people who can serve as control persons.
Volunteers chat with an avatar – a virtual assistant named Tina – while a webcam and microphone record their speech and facial expressions for the Modality.ai software to analyze.
Proponents of the study suggest that the number of ALS patients involved in the research has been low, as they often have difficulty getting to the facilities where the work is done.
However, most have smartphones and computers, which makes remote data collection a viable option.
For more information or to participate in the study, email lisa@everythingals.org or call (650) 833-9100. To learn more about the organization, visit Everythingals.org.
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