The Augmentative Communication Program (ACP) at Boston Children’s Hospital has received a $1.5 million donation to set up a program focused on improving the quality of life of amyotrophic lateral sclerosis (ALS) adult patients. ALS is a progressive neurodegenerative disease with no treatment to date.
The new program will be dedicated to promoting the development and adoption of comprehensive technologies with services like ‘message banking’ — which will allow ALS patients to communicate in their own voice. This proactive measure will enable patients to remain in direct contact with their family and friends throughout disease progression.
The inaugural financing gift for this program was made by Travelers Chairman Jay Fishman and wife, Randy Fishman, who have recently announced Jay’s diagnosis of ALS. Due to this announcement, Travelers employees and Board members have voluntarily joined forces to raise over $500,000 to support the establishment of the program. Other donors include the ALS Association, JPMorgan Chase and Jamy and Judy Dimon, Loews Corporation 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.
“This program will give newly diagnosed patients control over one particularly frightening outcome of the disease and will provide them with the ability to do something for themselves and their families,” Fishman stated in a news release. “My family and I are so moved by John’s passion and dedication to this. The support shown by Travelers employees is not something that surprises me — it’s how our company is, and I’m incredibly grateful for their generosity.”
Together, these donations add up to $4 million, offering a substantial contribution to the $10 million effort to achieve permanent endowment of the program.
ALS affects nearly 30,000 people in the U.S. alone. The disease affects motor nerve cells of the brain and spinal cord (which make muscles contract) leading to a slow, progressive degeneration. It is estimated that more than 5,000 people are diagnosed in the U.S. every year. Upon disease progression, patients have limited mobility and speech, further highlighting the importance of message banking. John Costello, MA, CCC-SLP will be the Augmentative Communication Program (ACP) director.
“We can’t change someone’s medical diagnosis,” noted Costello. “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 the message banking feature, ALS patients will be able to record and curate (set a database, or bank) words and phrases they would use the most, with full customization to include those which would be unique of that person, with a particular meaning to their family and friends. This way, if the patient comes to the point where they cannot speak anymore, they can still communicate. Specialists load these Hi-Fi digital inputs into assistive devices where the patient can then choose which messages to play, empowering them to speak with their natural voice.
The ACP at Boston Children’s Hospital will also provide comprehensive augmentative communication services to ALS patients in all stages of their condition, including low-tech or no-tech options to those who cannot use ‘message banking’ anymore. Other high-tech offers will include solutions to allow people to control their own computers and home environment.
“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 commented. “I am thrilled that we can now expand the number of people with ALS who can take advantage of this incredible technology.”
Costello is a trained speech pathologist who has been working in the field of augmentative communication for over 30 years. He has helped children with disabilities in their speech by employing and refining this ‘message banking’ method for 25 years. This idea first came to existence because he wanted to provide children with a way of communicating during the recovery period after major surgery.
“An intensive care nurse came to our program, noting that children in the intensive care unit who are on a ventilator or other forms of breathing support are unable to speak, sometimes for weeks at a time, and that this was very distressing for both children and families,” Costello recalled. “She wondered if there was anything we could do.”
This request eventually developed further into an informal inpatient service through which children who would undergo surgery met with ACP speech specialists to record a few messages before the surgery. They could then talk to their families and friends through the banked messages in these devices.
“I had no idea message banking was going to be as powerful as it was for these inpatient families,” Costello explained. “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.”
In 2009, Costello was offered an opportunity to employ this methodology with adult ALS patients at the suggestion of caregivers. Costello and his team now informally serve 50 patients each year, meeting with them early in their diagnosis to introduce proactive strategies like banking their messages before disease progression. ACP then matches the patients with the most fitting voice technologies. The fund now available will allow Boston Children’s Hospital to make this program a formal establishment, hopefully reaching a larger number of people. Additionally, the program will train ALS clinics throughout the country to be able to carry this approach as well.
“We’ve had amazing support from Boston Children’s all along,” Costello concluded. “What we’ve done to date has grown out of the strength of our otolaryngology and communication enhancement team and the whole institution. We are both grateful for and humbled by the generosity shown by all the initial donors, and are excited to see this program grow and help as many people as possible.”