ALS Ice Bucket Challenge Co-Founder Finds His Voice (Again)

Pat Quinn, 34-year-old ALS patient and co-founder of the Ice Bucket Challenge, has recently rediscovered his voice.

Three years after raising $115 million to help find a cure for ALS (a neurodegenerative disease) with the Ice Bucket Challenge, Quinn lost his voice, along with his ability to walk and use his hands. However, this past March, with the help of new voice-banking technology from the Canadian company, Lyrebird, the Yonkers, New York native re-harnessed the power of his voice.

With his newfound voice, Quinn emphasized the power of technology in helping combat the rare disease. “This technology gives me back a vital piece of myself that was missing,” he said. “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.”

“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.”

Oskar Westerdal, co-creator of Project Revoice—an international initiative to help patients with ALS sound like themselves again—spent a year working with Lyrebird and the Australian company, Finch, and his creative partner in Australia, René Schultz, to make Project Revoice a reality for Quinn and other ALS patients like him.

“This technology is 100 percent dependent on having consistent, high-quality voice material to work with,” said Westerdal. “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.”

Brian Frederick, executive vice president of communications for the ALS Association, emphasized the importance of ALS individuals having their voices. “Recreating Pat’s voice and hearing him use it for the first time with his friends and family was truly inspirational.”

“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.”

Today, Quinn continues to be an inspiration for others suffering with ALS with his voice via his social media channels. In 2014, he was nominated for Time Magazine Person the Year for his advocacy work.

For more stories in the rare disease community, follow Rare Disease Report on Facebook and Twitter.

References:

1. Man who started ALS Ice Bucket Challenge gets back his voice. Nypost.com. https://nypost.com/2018/04/12/man-who-started-als-ice-bucket-challenge-gets-back-his-voice/. Accessed April 12, 2018.