ALS Augmentative Communication Program Renamed for Advocate

ALS Augmentative Communication Program Renamed for Advocate
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Boston Children’s Hospital (BCH) is renaming its amyotrophic lateral sclerosis (ALS) Augmentative Communication Program to the Jay S. Fishman ALS-Augmentative Communication Program at Boston Children’s, the hospital announced.

Fishman was CEO of the American insurance firm Travelers Companies. A vocal advocate for those living with ALS and their families, he passed away in 2016 from complications related to the neurodegenerative disease.

Jay Fishman and his wife Randy contributed $1.5 million to the program’s initial funding in 2015, shortly after the Fishmans announced Jay’s diagnosis. 

“This program is an enormous blessing for ALS families, providing a glimmer of light in the midst of all of the darkness that ALS causes,” Randy Fishman said in a press release.

ALS leads to motor neuron death, which limits a person’s control of voluntary muscles. While often seen as progressive weakness of the arms and legs, muscles controlling swallowing, breathing, and speech also are affected. 

The program helps children and adults who are unable to speak or who have severely impaired speech communicate in their own voice through a technology known as “message banking.”

Message banking enables people with speech problems, which are common in ALS, to communicate with others using their own voice by digitally recording and storing examples of their natural voice, inflection and intonation, for use as their disorder progresses. Speech examples include words, phrases, sentences, and other personally meaningful sounds.

“BCH has been a leader for decades in providing pediatric augmentative communication care and in recent years has used those innovations, including pioneering work in voice preservation, to meet the needs of adult ALS patients to improve their quality of life. The generosity of the Fishman family has allowed us to become an international leader in the field,” said John Costello, director of the ALS Augmentative Communication Program.

Costello received the 2020 International Alliance of ALS/MND Association Allied Health Professional Award for his work in this area. 

Message banking is distinct from voice banking, wherein a person creates a personalized digital voice. Both techniques involve recording various phrases, but while voice banking uses those phrases to create a synthetic voice to use in place of one’s own, message banking provides a set of ready-to-use words and phrases that retain the nuances of the speaker’s natural voice. Some examples showing differences between the two can be viewed here.

“Our family is most appreciative of the care Jay received at Boston Children’s and we feel strongly that these tools be available and accessible to all who need them,” Randy Fishman said. “That’s why we remain committed to supporting this vital program.”

Forest Ray received his PhD in systems biology from Columbia University, where he developed tools to match drug side effects to other diseases. He has since worked as a journalist and science writer, covering topics from rare diseases to the intersection between environmental science and social justice. He currently lives in Long Beach, California.
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Inês holds a PhD in Biomedical Sciences from the University of Lisbon, Portugal, where she specialized in blood vessel biology, blood stem cells, and cancer. Before that, she studied Cell and Molecular Biology at Universidade Nova de Lisboa and worked as a research fellow at Faculdade de Ciências e Tecnologias and Instituto Gulbenkian de Ciência. Inês currently works as a Managing Science Editor, striving to deliver the latest scientific advances to patient communities in a clear and accurate manner.
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Forest Ray received his PhD in systems biology from Columbia University, where he developed tools to match drug side effects to other diseases. He has since worked as a journalist and science writer, covering topics from rare diseases to the intersection between environmental science and social justice. He currently lives in Long Beach, California.
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