Ice Bucket Challenge founder gets his voice back after ALS

ALS is a nightmare of a disease. It affects nerve cells in the brain and spinal cord, robbing patients of their ability to walk, eat, speak and eventually their ability to breathe.

But now a new project is promising to give ALS sufferers the ability to speak in their own voice again, without sounding like a computer. And it's started with the man who begain the Ice Bucket Challenge.

ALS, also known as Motor Neurone Disease, was relatively unknown until 2014 when Pat Quinn dumped a bucket of freezing water on his head, challenging others to do the same to raise money and awareness for ALS. But since 2014, Quinn is now no longer able to walk or speak.

Now, Project Revoice has taken samples of Quinn's speeches and YouTube videos promoting the Ice Bucket Challenge and built a digital recreation of his voice to replace the robotic sounding voice model he was using before.

Quinn is able to use the tech, linked up to existing assistive eye-reader technology, and by looking at parts of a screen, he can create text-to-speech in his own voice. It's the same technology that helped Stephen Hawking (who also lived with ALS) to speak -- but unlike Hawking's distinctive computerised speech, Quinn has a pretty close analogue of his old voice.

Project Revoice is the brainchild of two Australian ad land creatives from Sydney company BWM Dentsu, Oskar Westerdal and René Schultz, who wanted to help people experiencing ALS to use their own voice, even if they could no longer physically speak.

Canadian voice AI company Lyrebird is providing the tech behind the project. The company says it can create a digital copy of a human voice with a "voice bank" of a few hours of recorded speech.

"Essentially our model asks 'How can I differentiate your voice from the other voices?'," the company said in a statement. "It analyses the recordings, comes up with the characteristics that make a voice unique and is able to generate phrases based on that."

Quinn never "banked" his voice while he could still speak, but Project Revoice says his public appearances helped Lyrebird create an accurate picture of his voice.

"This technology is 100 percent dependent on having consistent, high-quality voice material to work with," said Westerdal. "Since 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 thinking about voice banking while they still can."

Project Revoice has plans to open the service up in mid-2018 to allow other people living with ALS/MND to record their voice for use if their condition deteriorates.

Quinn says he didn't like hearing his old computerised voice, so the new tech makes a big difference.

"This technology gives me back a vital piece of myself that was missing," he said. "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."

You can watch Quinn hearing his new voice for the first time in the video below. 

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