The ALS Association Furthers Commitment to Develop Technologies to Help People with ALS Live Better

The ALS Association is excited to announce $1.4 million in grants to help develop technology that will enhance the quality of life for people living with ALS. The funding supports research in fields ranging from assistive communications and noninvasive ventilation to wearable sensors and a brain-computer interface. 

The grants are part of the Association’s Managing ALS Research Program, which funds research for improving clinical, psychological, and social management of ALS, focusing on both people living with ALS and their caregivers. This includes research in developing assistive technology, measuring patient/caretaker burden, and improving quality of life

“Technology continues to develop at a rapid pace, and it is critical that we figure out how to harness it to make sure that is making life better for people with ALS,” said Dr. Kuldip Dave, vice president of research at The ALS Association.

Maximizing social connection in persons with speech impairment due to ALS. Dr. Jordan Green, Director of the Speech and Feeding Disorders Lab at the MGH Institute of Health Professions, was awarded $197,097 to support research into helping people with ALS who lose the ability to talk or have impaired speech stay engaged in day-to-day communications. Social engagement is critical to mental and physical well-being, yet the loss or impairment of speech can lead to social disengagement. Dr. Green’s research will develop new tools for monitoring speech and social connection in order to significantly enhance the ability to promote communication and increase social connection and quality of life for people living with ALS. 

Enabling independent home use of an intracortical brain-computer interface for control of multiple communication devices. Dr. Leigh Hochberg, a professor of engineering at Brown University, was awarded $200,000 to investigate BrainGate, a brain-computer interface that will allow people with ALS to control multiple technologies in home, enabling greater independence and communication. BrainGate harnesses signals from microelectrode arrays implanted in the brain to allow to control computers simply by thinking about the movement of their hand. 

Development and usability of a neuromuscular wearable system to enable reliable caregiver alerts and communication for people with ALS. Dexter Ang, CEO of Pison Technology, Inc., was awarded $200,000, to develop and test the usability of a Pison’s wearable muscle sensor technology to enable reliable caregiver alerts and communication for people with ALS. With this research, Pison aims to extend its technology by creating Canary, a cell phone application that will allow users to send preprogrammed text messages to caregivers. 

Eye gaze-based technology using Apple TrueDepth camera to enable communication for ALS patients. Dr. Fusheng Wang, associate professor of biomedical informatics at Stony Brook University, was awarded $199,998 to study the use of eye gaze-based technology using Apple TrueDepth camera technology to enable communication through common iPhone or iPads. 

Respiratory health management in amyotrophic lateral sclerosis through telemonitoring and nurse health coaching. Dr. Zachary Simmons at Penn State College of Medicine was awarded $197,302 to respiratory health management in ALS through telemonitoring and nurse health coaching. ALS causes breathing difficulties, which can be managed through use of noninvasive ventilation  devices. Evidence suggests that the early and regular use of noninvasive ventilators has a positive effect on survival and quality of life. The goal of this study is to determine whether additional respiratory support, mediated by innovations in telehealth services, telemonitoring, and health coaching, leads to improved respiratory-related quality of life.

Eye gaze controlled neck brace for ALS patients with head drop. Dr. Sunil Agrawal, professor of mechanical engineering at Columbia University, was awarded $200,000 to support the development of eye gaze-controlled neck braces for ALS patients with head drop. Dropped head syndrome is a common problem in ALS significantly impacting the quality of life of people with ALS. Currently, this problem is managed using static neck braces which keep the head upright by providing support under the chin. People with ALS find these uncomfortable to wear and their use often results in challenges in speech, swallowing, and breathing. The proposed research is aimed to fill this gap in management of head drop using a robotic neck brace not only to support the head, but also to provide dynamic head movements to people with the condition.

A mindful community for people with ALS and their primary caregivers. Dr. Ellen Langer of Harvard, was awarded $200,000, to developing solutions for a mindful community for people with ALS and their caregivers. The psychological impact of ALS on those diagnosed and caregivers is high, significantly affecting their overall quality of life. This project combines the impact of an optimized web-based mindfulness intervention previously tested with an internet-based social sharing and support platform. The application will be available for the entire community, and the psychological benefits that are expected will help support the needs and interests of people with ALS and their families.

To learn more about The Association’s research commitments and the many grants made possible by the kindness and generosity of donors to the Managing ALS Research Program, Click Here.

To hear Dr. Neil Thakur, vice president of mission strategy for The ALS Association, and Mark Calmes, vice chair of The ALS Association Board of Trustees, discuss the role assistive technology plays in helping people with ALS live better, Click Here

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