Nearly four years after the ALS Ice Bucket Challenge helped raise $115 million for research, the viral sensation continues to have an impact on patients, including co-founder Pat Quinn.
The 34-year-old lost his voice to the disease in 2017, but thanks to recordings he made and interviews he gave related to the challenge, a Canadian technology company was able to give it back to him.
Amyotrophic lateral sclerosis (ALS) is a disease that slowly killls the neurons controlling voluntary muscles.
Using just a few hours of Quinn’s interviews, technicians were able to digitally recreate his voice and pair it with his eye reader assistive device, which he then tested out for the first time in front of family and friends.
“It’s a strange feeling saying your first words a second time,” he said a video posted to the ALS Association website. “It’s like you don’t even realize how powerful, how personal and how unique your voice really is until it’s taken from you. My voice is how I fought back against the very disease trying to take it from me. Sorry I’m not going out that easy, I will make sure my voice is heard again.”
The funds for developing the technology came partly from the Ice Bucket Challenge. Quinn said that once he lost his voice, he shied away from participating in conversations because he didn’t like the sound of his computerized voice.
“This technology gives me back a vital piece of myself that was missing,” he said in a statement. “After hearing my own voice through this new technology, I was blown away! For patients to know that they can still speak in their own voice after ALS takes it away, [it] will transform the way people live with this disease.”
While Quinn did not purposefully compile recordings of his voice before losing the ability to speak, the project encourages patients to start doing it so they can have the option of using the technology.
“This technology is 100 percent dependent on having consistent, high-quality voice material to work with. Since ALS/MND is a progressive and sometimes unpredictable disease, we believe it’s crucial to get the message out now and encourage more people to start voice banking while they still can, so they have the voice material necessary to recreate their ‘Revoice’ when the full application launches,” said Oskar Westerdal, Project Revoice co-creator.