Jay S. Fishman ALS Augmentative Communication Program | Message Banking™

The ability to communicate is essential to human interaction. Of all the challenges ALS brings, many people tell us that one of the most devastating is the loss ofBoston Children's ALS Program Thumbprint speech. People with ALS have told us that losing the ability to speak is like losing an important part of self-identity. We believe that the greatest contributor to loss of identify and self when speech is difficult, is the loss of one’s authentic voice. Our voices define us. It is our acoustical fingerprint. How many times have you heard someone say ‘It is so good to hear your voice!’? We are able to provide comfort, establish personal connection and bring the spectrum of emotions to people around us with our voice and our unique intonation, prosody and passion.  

In 1991, one of the nurses from our tracheotomy program came to us and said there are kids who wake up in the ICU after surgery who are absolutely terrified and they can’t communicate. Our augmentative communication program began to meet children at bedside but immediately recognized that many children had a planned procedure and we could anticipate a nonspeaking condition prior to hospitalization. Boston Children’s initiated a first of its kind program that supported children to bank messages and then have access to those messages in their own voice using digital technology when they awaken in the ICU.  We called this process Message Banking and have updated and modified the process to support people with ALS. We define Message Banking as: Digitally recording and storing words, phrases, sentences, personally meaningful sounds using one’s natural voice, inflection and intonation. These messages are catalogued as .wav files and may then be linked to messages in a variety of augmentative communication technologies or sound storage files. This will allow you to ‘retrieve’ a message and speak it in your own voice but does not allow you to create novel messages by spelling. If you have recorded individual words, you may combine those words to create unique messages, although it will sound more staccato compared to your natural voice. 

Watch Holly using message banking and Nancy prepare her message banking:

This process is quite distinct from ‘voice banking’ as it allows one to capture and preserve humor, tenderness, passion and self. This video (below) demonstrates the difference between voice banking and message banking and we think illustrates the importance of message banking. A speaker created a high quality synthetic voice (voice banking). Messages are first spoken with that synthetic voice created through voice banking and then spoken again using the same speaker’s ‘message banked’ voice. 

Comparing a message spoken with a custom synthesizer created through voice banking to the same message recorded through message banking. These messages are examples of actual messages people with ALS have message banked.


Since we introduced the concept of Message Banking, we have had more than 200 people with ALS message bank anywhere from 150 messages to more than 4000! Many have then had those messages incorporated into their speech-generating device. Based on feedback from many people with ALS and the desire to have more direction with content to bank, we introduced the term Legacy MessagesTM

Legacy MessagesTM

Legacy MessagesTM are messages banked with unique intonation and prosody that are unique or particular to you. Some people have told us they are their ‘isms’!  It may be a ‘trademark’ message you say or it may be a trademark delivery of a message that many people say. A legacy message does not need to be meaningful to the general population instead it may have unique and personal meaning to only you and a loved one. Further, a legacy message does not need to be real words to be 

meaningful. It may be the way you clear your throat in a sarcastic manner to communicate “I told you so” or it might be the invented pet name you have for a loved one delivered with your unique voice, intonation and prosody and tenderness. Similarly, legacy message may be that stereotypical thing you say after your favorite sports team scores, it might be a movie quote that you use all the time or it may be a unique greeting you deliver to friends. Those close to you may be helpful with identifying these Legacy MessagesTM because sometimes they are so naturally part of socially relating with others, you may not even be aware you are ‘known’ for them. 

Boston Children's Message Banking for ALS patientsMany people with ALS have invited us to share the messages they banked with the hope it will give other people some ideas in their own journey with message banking. We tried to create general categories for ease of review. Please note that this is intended to be a document to give ideas, it is not a script of messages to record. 

Download the 60+ pages of messages banked here. 

Other resources

Click here to go to the free Message Banking site we have developed in collaboration with TobiiDynavox for use with any technology.

Watch video of a USSAAC/ISAAC webinar we did on the topic of Message BankingTM