An ALS sufferer gave voice to thousands like him around the world when he co-founded the Ice Bucket Challenge in 2014 — raising $115 million to help find a cure for the neurodegenerative disease.
Three years later, Pat Quinn, a 34-year-old from Yonkers, New York, lost his ability to speak, walk or use his hands. This March, Quinn regained the power to speak in his own voice, thanks to new voice-banking technology from Canadian company Lyrebird, the ALS Association said in a statement Thursday. The new tech was financed, in part, by funds raised from the Ice Bucket Challenge.
Up until now, Quinn used text and a computerized voice linked to special eye-gazing technology to communicate with others, much like famed physicist Stephen Hawking, who died from the disease last month.
“This takes speech tech to a whole new level and means everything to how I communicate. I really didn’t like to hear my old computer voice, so I often avoided getting involved in conversations,” Quinn said in a statement.
“This technology gives me back a vital piece of myself that was missing. After hearing my 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 will transform the way people live with this disease.”
On Thursday, the ALS Association launched Project Revoice, an international initiative to help patients with ALS, also known as motor neuron disease and Lou Gehrig’s disease, sound like themselves again.
Quinn didn’t record his voice prior to losing it, but thanks to footage from his multiple Ice Bucket Challenge interviews, Project Revoice was able to clone his voice. Lyrebird’s algorithms analyze several hours of quality audio recordings to digitally recreate a person’s speech.
Project Revoice is encouraging ALS sufferers to record their voices now so they can have the option of using a more natural voice — as opposed to an artificial synthesizer — when they lose their ability to speak. The group hopes to make a free Project Revoice application available to the entire ALS community by the end of 2018.
“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 create their ‘Revoice’ when the full application launches,” said Oskar Westerdal, co-creator of Project Revoice.
Westerdal and his creative partner in Australia, René Schultz, spent a year collaborating with Lyrebird and Australian company Finch to make Project Revoice a reality.
“Recreating Pat’s voice and hearing him use it for the first time with his friends and family was truly inspirational,” said Brian Frederick, executive vice president of communications for the ALS Association.
“Our next step is to build this into a program to ensure that people with ALS can maintain that unique part of themselves — their voice — even after they lose the ability to speak. This amazing new technology will make it much easier and quicker for people with ALS to record their voices so they can later be recreated.”
Getting his natural voice back is just one of many milestones for Quinn, who continues to inspire people suffering from the disease. In addition to raising millions for the disease with the Ice Bucket Challenge, Quinn was nominated for Time Magazine Person of the Year in 2014 for his advocacy work. He credits social media with helping him to connect with other ALS patients and inspire them to keep fighting.
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