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Will You Lend Us Your Voice?

Check out our May 2019 edition of ‘Science Corner’, with Fernando Vieira, M.D. – the Chief Scientific Officer at ALS Therapy Development Institute. Stay tuned every month for exciting updates on ALS research!

Losing your voice. It is one of many challenges people diagnosed with ALS will confront. For many, it’s one they fear most over the course of their disease, and with good reason. Losing the ability to speak, is usually a slow progression, but over time it becomes increasingly more difficult for people with ALS to vocalize their thoughts clearly. It can also be difficult for others to understand someone who has a neurodegenerative condition like ALS, that attacks the very muscles we use to make vocal sounds, verbalize and simply talk.

Many people with ALS will use communication devices at some point, turning to onscreen key boards that respond to eye-gaze technology or other commands. For Augie, he controls his device via a rollerball that he maneuvers with his toe. Pretty remarkable technology that’s come a long way, but yet these communication tools are still too often slow and frustrating for everyone involved.

Our team of scientists at ALS TDI, through an exciting new partnership with Google, is working to change that. Working together, we hope in the near future there will be a variety of personalized voice recognition options available to improve communications for people with ALS.

In the past several years, voice recognition modeling has advanced significantly using artificial intelligence and technology, but it still doesn’t work well for those that are voice impaired. That’s in part because no one has collected large enough data sets of vocalizations from people with ALS, or other disabilities where speech is affected, like cerebral palsy or Down’s syndrome, as has been the case in collecting data and examples to decipher accents and dialects.

The vision is: the more “voice impaired” samples we can collect and integrate into the Google AI model, the better its voice recognition technology will be at recognizing the varied or impaired speech patterns of people with ALS, and others. With the limited data already collected, results are proving positive. It is exciting, but we need more data. We need more voices!

That’s where people with ALS come in. By participating in ALS TDI’s Precision Medicine Program (PMP), anyone with ALS can help advance this exciting voice recognition technology.  Through PMP, we are collecting voice recordings from people with ALS and will use these data to optimize Google’s AI-based algorithms and work to apply it to our ALS learnings and discoveries in the ALS TDI laboratory.

Every bit of new information we unravel about ALS through our PMP efforts help us reveal other changes happening to the body, simultaneously, giving us new ways to learn, consider and advance new treatment options for ALS.

Such technological advancements are coming fast, and may one day allow people with ALS to never lose their voice – among other things! Strategic partnerships, like the one we now have with Google, could be gamechangers for our incredible ALS community.

If you are a person with ALS, or know someone who is, please have them reach out and connect with our team to participate in this exciting work.


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