It’s been several years since Pat Quinn was first diagnosed with ALS. Instead of becoming resigned to his life with the disease, however, Quinn became an outspoken advocate for ALS research, which eventually spurred him to co-found the Ice Bucket Challenge – a viral video fad that garnered a record amount of donations for ALS research. But as the disease continued to affect Quinn, he slowly lost his ability to speak.
While there’s existing technology that allows ALS patients to speak via computer programming, many people are apprehensive about using it because they don’t like hearing themselves speak through the impersonal voice of a robot. That’s why an international initiative known as Project Revoice is recreating the voices of ALS patients.
“It’s a strange feeling saying your first words a second time,” says Quinn. “I’ve always loved making speeches, as you know, but this is a whole new experience. It’s like you don’t even realize how powerful, how personal, how unique your voice really is until it’s taken from you.”