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Message banking: Giving a voice to adults with ALS and kids in the ICU

Roughly 30,000 people in the U.S. currently live with amyotrophic lateral sclerosis (ALS), a fatal disease in which the motor nerve cells of the brain and spinal cord (which signal muscles to contract) slowly but progressively degenerate. Eventually, ALS robs people of the ability to move and speak.

But they can still have a voice.

“We can’t change someone’s medical diagnosis,” says John Costello, MA, CCC-SLP, director of Boston Children’s Augmentative Communication Program (ACP) at Boston Children’s Hospital. “But we can support people to maintain dignity, control and social connectedness while expressing their true selves and remaining active members of the world around them.”

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