It has been several years since Pat Quinn was first diagnosed with ALS, a devastating neurodegenerative disease that causes the body to progressively lose all motor function.
Instead of becoming resigned to his life with the disease, however, Quinn became an outspoken advocate for ALS research, which eventually spurred the former athlete 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 is currently existing technology that allows ALS patients to speak via computer programming, many people are apprehensive about using the tech 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 – such as Pat Quinn – so they can embrace the familiarity of their own voices once more.
“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.”
“After my diagnosis, I began telling my story to people knowing that ALS would one day try and shut me up. Sorry I’m not going out that easy, cause guess what? My voice is back. I will make sure my voice is heard until ALS stops robbing people of their own voices. ALS has lost this round.”
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