Boston Children's Hospital Establishes a Program to Preserve the Voices of ALS Patients

The Augmentative Communication Program (ACP) at Boston Children's Hospital has received a $1.5 million gift to establish a program to preserve the voices of patients with amyotrophic lateral sclerosis (ALS), a fatal and progressive neurodegenerative disease.

The initial gift creating this program was made by Travelers Chairman Jay Fishman and his wife, Randy. Fishman has been diagnosed with ALS. Other initial donors include The ALS Association, JPMorgan Chase, Jamie and Judy Dimon, Loews and James and Merryl Tisch, Stone Point Capital, Charlie and Amy Scharf, Wasserman Media Group, American Financial Group, Bob and Martha Lipp, and Team Gleason.

These contributions, which total nearly $4 million, represent a substantial kickoff of an effort to raise $10 million< for the permanent endowment of the program. John Costello, will be the ACP director.

Roughly 30,000 people in the United States currently live with ALS, in which the motor nerve cells of the brain and spinal cord degenerate. Over time ALS robs people of the ability to move and speak.

"We can't change someone's medical diagnosis," Costello said in a statement. "But we can help them maintain dignity, control and social connectedness while expressing their true selves and remaining active members of the world around them. After all, communication is the thread that connects us all."

With message banking, patients with ALS record and curate words and phrases before losing their speech. Specialists load those digital recordings into assistive devices that allow patients to select and play the messages at will, giving them the power to speak to those around them through recordings of their natural voices.

"If you could not speak and you want to say to someone, 'I'm thirsty,' a computer-generated synthetic voice is fine. If, however, you want to tell your child, 'I'm so proud of you,' you want it to come from you in your own voice," Costello said. "I am thrilled that we can now expand the number of people with ALS who can take advantage of this incredible technology."

"I had no idea message banking was going to be as powerful as it was for these inpatient families," Costello said. "Hearing their child 'speak' in their own voice helps families maintain a connection with their children. Our medical staff has said it gives them a completely different sense of who their patients are. And patients have repeatedly told us how special it is to be able to communicate like this post-operatively."


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