This Tech Gave the ALS Ice Bucket Challenge’s Co-Founder His Own Voice Back After He’d Lost It
Amyotrophic lateral sclerosis, commonly called ALS or Lou Gehrig’s disease, is a devastating, degenerative neurological disorder. Its cruelties include robbing patients of activities we often take for granted, like walking, eating, talking, and even breathing. But a new tech initiative could help restore ALS patients’ most personal attributes: Their very voices.
On Thursday, the ALS Association announced it was launching “Project Revoice.” Under the effort, ALS patients can record their voices while they still can in a process called “voice banking”—a protective measure so that they may still speak in their own voices, through a computer, long after their disease has eaten away at that ability. (Recently deceased physicist Stephen Hawking famously spoke through a digitized voice with a computer that detected slight twitches in his facial muscles and translated them into speech.)
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The project’s launch featured a prominent ALS patient and research advocate: Pat Quinn, co-founder of the ALS Ice Bucket Challenge, an initially-derided social media stunt that went on to raise hundreds of millions of dollars for ALS research and may have spurred important new discoveries about the disease’s genetic roots. Quinn lost his own voice long ago—but Project Revoice recreated it for him.
“Pat did not record (or bank) his voice before ALS robbed him of his ability to speak, but using footage from his many Ice Bucket Challenge interviews, Project Revoice was able to clone his voice,” the group said. “This takes speech tech to a whole new level and means everything to how I communicate,” added Quinn himself, who also used the tech to speak to friends and family with his own voice. “I really didn’t like to hear my old computer voice, so I often avoided getting involved in conversations.”