Speech Accessibility Project Recruits People With ALS

Author: Beckman Institute for Advanced Science and Technology
Published: 5 Jan 2024 - Updated: 4 Nov 2026
Publication Type: Announcement

Table of Contents:
Synopsis - Definition - Overview - FAQs - Insights, Updates - Related Content

Synopsis

This information announces that the Speech Accessibility Project at the University of Illinois Urbana-Champaign began recruiting adults with amyotrophic lateral sclerosis (ALS) in the United States and Puerto Rico in early 2024, after earlier groups of people with Parkinson's disease and Down syndrome. Funded by Amazon, Apple, Google, Meta and Microsoft, the project records speech securely at the Beckman Institute and shares it with technology companies, and later with approved nonprofits, so voice recognition can learn to understand speech affected by disability. Project leader Mark Hasegawa-Johnson explains that the aim is to let people with ALS keep using their own voices for as long as possible as their speech becomes harder to understand. The project matters to people living with ALS, their caregivers and the ALS charity Team Gleason, which joined the effort to widen access to assistive communication technology.*

At a Glance

• 1 - Participants could earn up to $180 in Amazon eCodes.
• 2 - Payments came in three $60 steps after 200, 400 and 600 recordings.
• 3 - The project had already shared more than 100,000 speech samples with its funders.
• 4 - Stephen Hawking used a speech synthesizer for decades, a path many people with ALS now follow.

Topic Definition

Amyotrophic Lateral Sclerosis

Amyotrophic lateral sclerosis (ALS), also called motor neuron disease or Lou Gehrig's disease, is a progressive neurological condition in which the nerve cells that control voluntary muscles gradually die, leading to weakness, loss of movement and, over time, difficulty speaking, swallowing and breathing. There is no cure, but treatments, therapy, assistive technology and communication devices can help people manage symptoms and stay connected with others.

Overview

Funded by Big Tech companies Amazon, Apple, Google, Meta, and Microsoft, the University of Illinois Urbana-Champaign aims to train voice recognition technologies to understand people with diverse speech patterns and disabilities. The Speech Accessibility Project has expanded its recruitment and is inviting U.S. and Puerto Rican adults living with amyotrophic lateral sclerosis (ALS) to participate.

The Speech Accessibility Project is now also recruiting people in Canada with Parkinson's disease, cerebral palsy, amyotrophic lateral sclerosis, Down syndrome and people who have had a stroke.

The project began recruiting people with Parkinson's disease in spring 2023, and those with Down syndrome in fall 2023. The project will also recruit people who have cerebral palsy or have had a stroke.

Researchers at UIUC's Beckman Institute for Advanced Science and Technology are securely recording participants and safeguarding their private information.

So far, the project has shared more than 100,000 speech samples with the Big Tech companies, and the data will eventually be available to non-profits and companies who agree to safeguard participants' privacy.

"Just like human listeners, AI listeners do better when they have some experience with the type of speech they're listening to," said Mark Hasegawa-Johnson, a professor of electrical and computer engineering who is leading the project.

Harnessing voice recognition technology has the power to change lives, he said.

"Stephen Hawking, the physicist, continued his research for decades after he became nonvocal by using an automatic speech synthesizer to communicate on his behalf. Many people with ALS now follow Hawking's lead, learning how to use speech synthesis as a communication tool so that they will be able to communicate with loved ones even when their voices become less intelligible," he said.

"The Speech Accessibility Project seeks to make it possible for people with ALS to communicate using their own voices as long as possible by training automatic speech recognizers to understand voices that have reduced intelligibility because of advancing symptoms of ALS," he said.

Team Gleason, which serves the ALS community through a broad range of programming, assistive technology, equipment, and robust support services, shares the goal of this effort to expand the usefulness of speech recognition tools.

"Team Gleason strives each day to provide the best available assistive technology for the ALS community while simultaneously exploring ways to advance future solutions," said Blair Casey, executive director for Team Gleason.

"Technology has the ability to overcome communication barriers and increase independence. Team Gleason is proud to help accelerate this effort for people living with ALS and anyone else with speech differences. Team Gleason's involvement in the Speech Accessibility Project will positively impact millions of people globally whose speech may be challenging for others to understand."

Participants and caregivers will be compensated for their time in the form of Amazon eCodes. Participants will receive a total of $180 in three increments: $60 after recording the 200th sample, an additional $60 after recording the 400th sample, and an additional $60 after recording the 600th sample.

Those interested in participating can sign up online.

List of Well Known People with Motor Neuron Disease (MND)

Frequently Asked Questions

NOTE: Researched FAQs by Disabled World (DW)

What is voice banking?

Voice banking means recording many phrases in your own voice while speech is still clear, so a computer can later create a synthetic voice that sounds like you for use with a communication device.

How does ALS affect speech?

ALS weakens the muscles of the lips, tongue, throat and breathing, which can make speech slow, slurred, quiet or nasal. This is called dysarthria and usually worsens over time.

What communication devices help people with ALS?

Options include text-to-speech apps, eye-gaze computers, switch-access systems and alphabet boards. A speech-language pathologist can help choose the right tools.

Does Medicare cover speech-generating devices?

Medicare Part B can cover speech-generating devices as durable medical equipment when they are medically necessary and prescribed after an evaluation.

What is Team Gleason?

Team Gleason is a US nonprofit founded by former football player Steve Gleason, who has ALS. It provides assistive technology, equipment and support to people living with ALS.

Can people outside the United States join the project?

The project later opened recruitment in Canada. Eligibility has changed over time, so the project website lists current countries and conditions.

Is my speech data kept private?

The project says recordings are stored securely and shared only with organizations that sign a data use agreement protecting participant privacy.

Can a caregiver help with the recordings?

Yes, caregivers can help participants sign up and record, and the project has offered caregivers their own compensation for their time.

Insights, Analysis, and Developments

Editorial Note: ALS often affects speech early, and many people bank their voice or learn to use eye-gaze and text-to-speech systems while they still can. Better speech recognition offers a different kind of help: it lets people keep using their natural voice to control phones, computers and smart home devices for longer, before switching to other tools. Because the condition progresses, recordings from people at different stages are especially valuable for training systems that keep working as speech changes. People with ALS who want to take part should check the project website for current eligibility, and can ask an ALS clinic or speech-language pathologist about voice banking and communication devices at the same time.*

Attribution/Source(s): This quality-reviewed publication was selected for publishing by the editors of Disabled World (DW) due to its relevance to the disability community. Originally issued as a press release by Beckman Institute for Advanced Science and Technology and published on 5 Jan 2024. Last updated on 4 Nov 2026. This content may have been edited for style, clarity, or brevity.

* Editorial additions by Ian C. Langtree.