Project Revoice Gives People With ALS Their Voice Back

Project Revoice aims to give more people with ALS the opportunity to record and recreate their own unique voice for future use with Augmented/Alternative Communication (AAC) devices.

Apr 28, 2018
Special Collections: THE ABILITY IN DISABILITY

Everyone remembers the viral ALS Ice Bucket Challenge from the summer of 2014. ALS, Amyotrophic lateral sclerosis, also known as motor neuron disease (MND), and Lou Gehrig's disease, is a disease which causes the death of the neurons that control voluntary muscles. The disease is fatal, and the cause is unknown 90-95 percent of the time, and it has no known cure.

One of the effects of this tragic disease is the loss of speech. Aside from raising over $100 million in just 30 days, another beautiful accomplishment of the Ice Bucket Challenge was that it gave a voice to those suffering silently from ALS. But, as with all viral trends, it died down, and once again people forgot about ALS.

On April 12, 2018, the ALS Association announced the launch of “Project Voice.” This project records ALS patients’ voices so that they can still “use” them even after losing the ability to speak. The Canadian company Lyrebird takes only two to three hours of “voice banking” audio samples, and that is all you need to recreate someone's voice.

Your voice is such an important part of who you are. “One of the hardest things about ALS is losing the ability to speak,” says Pat Quinn, founder of the Ice Bucket Challenge,  “I don’t want to sound like a computer. I want to sound like me.” Quinn did not have the opportunity to bank his voice before his disease robbed him of it. By founding the Ice Bucket Challenge, Quinn gave back a voice to all those who have ALS.

That is why, although he never banked his voice, Project Revoice worked with footage from the Ice Bucket Challenge coverage to give Quinn back his voice, “It is really because Pat gave his voice to the ALS community that we are now able to give him his voice back.”

“It’s a strange feeling saying your first words for a second time,” says Quinn in an emotional video of the launch of Project Revoice, “It’s like you don’t even realize how powerful, how personal, and just 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.”

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RISI ADLER FINKEL, CONTRIBUTOR
Risi has a passion for reading, traveling, and food. When she isn't writing about those things, she is experiencing them with her husband and son. One of the reasons she loves to travel is to learn about all the good in the world, and share these stories with others.

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