The physical impact of living with ALS presents many challenges, especially as the disease progresses. Muscle weakness and issues with mobility, balance, flexibility, and communication can make everyday activities difficult or even impossible. With the help of assistive technologies, people living with ALS can maintain their independence and pursue their passions for as long as possible.

Assistive Technology Grants

Last year, we launched our new Assistive Technology Grants, which provide academic and industry researchers with funding to develop new technologies or adapt existing technologies that can help maintain or improve the health, independence, and quality of life of people with ALS. Following the first request for applications, we committed more than $3.1 million to support the development of eight technologies designed to address some of the most common challenges faced by people living with the disease.

Improving Mobility

According to the results of a 2020 ALS Focus survey, limitations with mobility or walking and difficulty with everyday activities are the symptoms that have the greatest impact on the lives of people with ALS. While a variety of mobility aides and equipment are already available, four of our Assistive Technology Grant recipients are looking to leverage advances in robotics, artificial intelligence (AI), self-driving vehicles, and brain-computer interfaces (BCI) to help people living with ALS move around more easily and perform daily tasks more independently.

• Taylor Dick, Ph.D., group leader in the Neuromuscular Biomechanics Lab at the University of Queensland in Australia, is developing wearable robotic exoskeletons for people with neurological conditions, including ALS. “The biorobotic assistive devices included in this project are designed to simplify daily mobility tasks for people with ALS, such as standing and walking,” she says. She plans to use her grant to conduct a world-first study to understand if people living with ALS want to use these wearable assistive devices and the effect they have on movement. “Ultimately, the project aims to restore and extend the user’s ability to move, significantly enhancing the autonomy of people living with ALS,” she explains. Learn more about this project.
   
• Hao Su, Ph.D., an associate professor at North Carolina State University and the University of North Carolina at Chapel Hill, is partnering with Picasso Intelligence to develop a lightweight, portable soft exosuit that enhances arm function by supplementing a person’s joint movements. “By leveraging this grant funding, we will be able to tailor and optimize wearable robot technologies,” he says. This includes customizing the exosuit for the personalized needs of people living with ALS and optimizing the AI-powered controller to provide safe and adaptive assistance that aligns with the user's changing upper limb capabilities. He added, “Thanks to the nature of an assistive robot (instead of a rehabilitation robot or medication that takes time to see its impact), it is anticipated that we will see immediate benefits to improve upper limb function when people wear it.” Learn more about this project.
   
• James Schorey, chief technology officer at Control Bionics Inc., is leading the development of an autonomous, self-driving wheelchair module, known as DROVE, that people with advanced ALS can use to move safely and independently around their home or other locations. “We want DROVE to be a product that increases the independence of those with ALS while lightening the workload for their caregivers and family members. This increased user independence … it's a refreshing chance to say for once ‘join me’ rather than ‘help me,’” he says. With our funding, Schorey plans to assess how easy it is to install and use the DROVE system, test the technology in multiple real-world settings, and design upgrade packages for multiple wheelchair types/manufacturers. Learn more about this project.
   
• James Tung, Ph.D., who leads the Neural and Rehabilitation Engineering Lab at the University of Waterloo in Ontario, Canada, is also interested in developing new ways to control electric powered wheelchairs without the need for a keyboard or joystick. He is testing a wearable BCI system developed in partnership with Cognixion Inc. that uses electric signals from the brain to directly control a wheelchair. The Assistive Technology Grant he received will help further develop this technology by integrating established eye-tracking control with the new BCI controls. Dr. Tung will also compare the effectiveness and feasibility of controlling a wheelchair using an eye-tracking, BCI, and hybrid eye-tracking and BCI approach. Learn more about this project.

Enhancing Communication

Most people living with ALS (about 80–95%) will, at some point, no longer be able to communicate using their natural speech. Many turn to augmentative and alternative communication (AAC) devices, which are important for them to maintain the ability to express themselves but also can be frustratingly slow and cumbersome to use daily. Three of our awardees are looking at ways to enhance and advance AAC technology.

• Julia Berezutskaya, Ph.D., from the University Medical Center Utrecht’s Brain Center in the Netherlands, is focused on making it easier for people living with ALS to communicate at home using BCIs, which are currently only used in labs with researcher supervision. “Brain-computer interface (BCI) technology holds a lot of potential but needs further development to be ready for societal uptake,” she says. “With this project, I hope to make BCIs ready for independent home use by people with ALS.” To do this, she and her team will develop speech-based software in consultation with people living with ALS that can be used across different BCI devices and platforms. Learn more about this project.
   
• David Brandman, M.D., Ph.D., co-director of the University of California Davis Neuroprosthetics Lab,​ is developing what he calls a “brain-to-voice neuroprosthesis,” which uses an implanted BCI to synthesize a person’s voice in real-time as they think about speaking. This technology has been successfully used by one participant in the lab. “The purpose of this funded project is to empower our user (and others) to use the system whenever, and however, they want. This will have an obvious and immediate impact on the personal autonomy of people living with ALS,” Dr. Brandman says. The project's overall goal is to help people living with ALS maintain rich social and professional lives by empowering them to communicate simply by trying to speak. Learn more about this project.
   
• Christopher Gibbons, Ph.D., a senior vice president at Smartbox Assistive Technology Ltd., aims to leverage recent AI advances—specifically the large language model technology utilized by ChatGPT—to speed up text and speech generation by the company’s AAC platforms. The goal is to alleviate the trade-off between rate and quality of communication, leading to conversations that are longer, richer, and more representative of how the person would communicate if they were using natural speech. Learn more about this project.

Preventing Complications

Because ALS is a progressive disease, a person’s health is constantly changing, and oftentimes in ways their health care team isn't aware of. However, if these changes could be detected sooner, even as they were developing, the care team could provide more timely treatment, and potential complications could be avoided, or at least reduced.

• William Janes, OTD, an assistant professor at the University of Missouri, is interested in adapting new AI tools to provide greater insight into the health of people living with ALS. With this grant, he will test the potential of an in-home monitoring system that alerts the health care team to falls or health changes before hospitalization occurs. “My hope is that this funded project gets us closer to detecting and acting on imperceptibly small changes before someone with ALS even knows their health may be declining. In that way, we hope to slow the clinical progression of the disease, helping people with ALS live longer, healthier lives,” he says. Learn more about this project.

We are determined to create a world without ALS. Until we do, we continue to find new ways to make ALS livable for everyone, everywhere, and empower people with ALS to live their lives to the fullest.

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