One of the very worst diseases I can imagine is ALS. I had a friend - not a close friend, but a friend nonetheless - who died of ALS, and it was just brutal to see this vibrant, brilliant, funny, kind, generous, irreverent very tough guy suffer through this. That Jake was also an athlete - a rugby player, a multi-multi-multi-multi-marathoner - made his dying of a disease that robs you of your mobility all the more poignant. But even if someone lacked Jake's wonderful character and traits, they wouldn't deserve to die from ALS. There is no one on the face of the earth who I despise more than I do DJT, and I wouldn't even wish ALS on him.
ALS pretty much robs you of everything, including speech.
I don't know David Betts, but thanks to a story I saw on the news, I know of him.
What David Betts did was develop an "AI-powered text-to-speech app. It speaks back in your choice of dozens of voices, but the kicker is, it's your actual voice."
He dubbed the app "Talk to Me, Goose."
"If anyone is a 'Top Gun' fan, it's the very first line in the very first film," David Betts said. "It's what he says when he needs a little dose of courage, and I kind of thought I'm going to need a little dose of courage." (Source: WCVB)Although I liked 'Top Gun' well enough to also watch (and enjoy) the sequel, I wouldn't say I was exactly a fan, and I had no recall of the movie's opening line. (I did remember that Mav's (Tom Cruise's) best buddy was Goose (Anthony Edwards), and that Goose died in a freak top gun sort of accident.
Anyway, Goose sure talked to David Betts, and he went out and created an app that will let those with ALS speak in their own voice.
He first looked at what was around for folks with speech limitations. He didn't find much
"They were still predominantly using what I found to be voice technology providers that sounded very robotic, and that's what terrified me. I did not want to sound like a robot," he said.
The technology to make voice clones already existed, so he took it a step further, learning how to create an app and putting it all together.
"I felt like I didn't have anything to lose, like there was no downside," Betts said.
And plenty of upside for those who could use a break.
Having successfully used his own app, Betts asked the question "How can we take this technology and reconnect people with their own voice?" The answer was to partner with an organization with broad reach into the ALS community. So he joined forces with Live Like Lou, an organization that supports those with ALS and their families, to make the app available for free. (The organization honors Lou Gehrig, the Yankees great of the 1930's who died of ALS.)
Available on iOS and Android, Talk to Me, Goose! helps individuals express themselves and share stories using advanced text-to-speech and personal voice cloning, even if their natural speech changes.
My friend Jake had a fast-moving version of ALS and lived less than a year post-diagnosis. During that year, he raised a ton of money for ALS research, including throwing a 65th birthday party fundraiser for himself that, on a snowy January night in 2020, just before the COVID curtain dropped, brought out about 500 folks to celebrate Jake's life and raise money for ALS. (Amazingly, this was a very fun party: an Irish wake while the person being waked was still alive. Jake's voice was going, but he could still talk to pretty much everyone there.) Jake also continued to run his signature charity (Christmas in the City, which focuses on making the holidays a little merrier and brighter for poor and homeless families in Boston). And I'm pretty sure he ran a half-marathon in there, too.
If I were diagnosed with ALS, I don't know what I'd do, but it probably wouldn't be run a half marathon or invent an app to help others. So bravo, David Betts. (And to Jake: we all still miss you!)
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