Steve Gleason in 2016. Photo by Collision Conf via Flickr.
“It’s my belief that most of what ALS takes from people, technology can give back,” said Steve Gleason in the film “Gleason,” a documentary that takes an unflinching look at his first five years living with ALS. Steve was diagnosed with the disease in 2011, not long after his retirement following a successful career as a special teams player for the NFL’s New Orleans Saints. Adopting the motto “No White Flags,” Steve set out on a mission to continue to live a purposeful, productive, and meaningful life, in spite of his disease.
As Steve’s ALS progressed, he knew that the most important keys to accomplishing his goals would be to find the right care and the right adaptive technology for mobility and communication. He quickly started voice banking – recording samples of his speech so that, when he was no longer able to talk, he would be able to electronically recreate his voice through text-to-speech. Soon after, he began trialing other devices, like eye gaze computers and power wheelchairs.
To help with his care, Steve and his wife Michel soon brought on Blair Casey. Blair had met Steve several years earlier as a staff member for the Saints. They quickly became close friends, and soon Blair was working as Steve’s assistant. Today, Blair serves as the executive director of the ALS organization Steve and Michel founded, Team Gleason.
“I remember getting an email that was sent to a few people,” says Blair, “where he expressed that he had been diagnosed with ALS, and he was scared. But he wanted to approach ALS with the same perseverance and fortitude that he had used in the NFL. Then, shortly after he came out with his diagnosis, Steve and Michel were thinking ahead about needing help, so they asked me to come on as a caretaker right around the time they started Team Gleason.”
Founding Team Gleason
Steve knew at the outset of his ALS journey that he wanted to do what he could to help others in his situation. After looking at the landscape of ALS nonprofits, Blair says, Steve saw a need for an organization that would focus on the “now needs” of people with ALS. He and Michel founded Team Gleason to help others using the lessons they were learning as they navigated Steve’s own ALS journey.
“Steve saw that, with the right technology, the right equipment, and the right care, you can live with this disease, and you can find purpose,” says Blair. “But you need to have the right tools to do it. So, he started Team Gleason with a mission to provide and advance assistive technology for the ALS community. The vision that he had was a world where people with ALS have the resources not just to live, but to live productively and purposefully.”
In the 13 years following his diagnosis, Steve has remained one of the most well-known advocates for ALS in the country. He’s been featured in public events from NFL games to Pearl Jam concerts, working to spread ALS awareness and his message of resilience. In 2016 “Gleason,” the documentary about his life, was released to rave reviews. Earlier this year, Steve published a memoir, A Life Impossible, that quickly became a bestseller. All the while, the organization he founded has provided more than $40 million in services to people with ALS across the country.
Providing Essential Technology for Living with ALS
Team Gleason’s primary mission is to provide assistive technology to people with ALS, focusing on mobility and communication. They offer access to things like power wheelchairs, eye-gaze communication devices, and even home automation devices. This equipment can be essential to maintaining quality of life as ALS progresses, but it is often very expensive, and not always fully covered – or covered at all – by insurance.
When a person with ALS applies for assistance from Team Gleason, their staff will evaluate their current and future needs and advise them on how to obtain the proper equipment. For devices that are partially covered by insurance, Team Gleason covers the copay. If someone lacks insurance coverage, they will work to provide equipment free of charge.
“We have some of the most passionate people that are helping people with ALS navigate insurance challenges,” says Blair, “making sure that people get the things that are in their Medicare benefits. Benefits are a challenge for people, and we need to find a way to make sure that people know what they have. And if somebody doesn't have access to Medicare benefits, we will do a remote evaluation, and we will provide the proper piece of technology.”
Advocating for Accessibility and Access
Team Gleason’s efforts to make technology accessible to people with ALS go beyond providing the devices themselves, however. The organization also works to encourage innovation and lobby for policies to improve access and coverage. In one major legislative victory, Congress passed the Steve Gleason Act in 2015, mandating that Medicare provide coverage for eye-gaze communication devices. Steve himself has been vocal in directly challenging companies to dedicate resources to new innovations in assistive tech.
“In 2014, Steve challenged Microsoft at a hackathon to develop something that would let him drive his wheelchair with his eyes,” says Blair. “Over the course of two years, Microsoft supported a company called Tolt Technology to bring that to market. And now you can drive your wheelchair with your eyes.”
Through the years, the organization has worked with many other companies to create innovative approaches to things like digital voice preservation, home automation, and even helped to develop an eye gaze TV remote with Comcast. They also support research into new assistive technologies at the Steve Gleason Institute for Neuroscience at Washington State University, as well as at the Team Gleason AT Lab, housed in their own headquarters.
The Speech Accessibility Project
One large effort that Team Gleason is currently involved in is the Speech Accessibility Project – a collaboration between Amazon, Apple, Google, Meta, and researchers at The University of Illinois Urbana-Champaign. The project aims to collect data from people with a variety of conditions that cause dysarthria, or atypical speech, to improve the accessibility of the voice recognition products across the tech industry. To achieve this, they are working with several organizations serving these communities to recruit participants. Team Gleason has undertaken the effort to enroll people with ALS and promote the project in the ALS community.
The Speech Accessibility Project has its origins in research involving the ALS Therapy Development Institute (ALS TDI) – Project Euphonia. In 2018, a team of Google researchers undertook a project to create new tools for people with dysarthric speech. Knowing they would need a large dataset of voice recordings for their research, they reached out to ALS TDI about using data collected through the ALS Research Collaborative (ARC) Study. Through ARC (then known as the Precision Medicine Program), ALS TDI researchers had already collected thousands of recordings of people with ALS. Working together to analyze these data, they soon realized the potential of these recordings to improve the accessibility of voice recognition tech, not only for people with ALS, but for many other diseases.
“If you look at Project Euphonia,” says Blair, “how it started for research but then allowed for creating an impact on people with ALS’ daily lives, the result of that was industry realizing the importance of advancing nonstandard speech recognition. Now you have the Speech Accessibility Project, which is the five big tech companies coming together to capture that same type of information on a much larger scale to improve nonstandard speech recognition overall, not just for ALS.”
Team Gleason’s Ongoing Mission
These projects and programs are hardly an exhaustive list of the work Team Gleason is doing to improve the lives of people with ALS. The organization also offers things like accessible travel adventures for people with the disease, support for caregivers, and much more. At the core of all these efforts is Steve’s commitment to helping others live a full life – like the one he has lived – with ALS.
Blair says that Steve’s story of resilience is key to understanding the mission of Team Gleason – and the best way to learn that story is through his own words. Thankfully, for those who want to know more, Steve’s words are readily available, in his book and in the documentary about his life.
“For me, personally, I've probably seen the documentary 40 times, and I've read the book quite a few times,” he says. “I was there for a lot of it, and in the moment I never cried. We always got past it together. But it always gets to me every time I go back and relive where we were and how we got here.
“To be an inspiration, it's something Steve always did very well. But to build something like Team Gleason, a team of people that shared those same values? That's not easy. You can't force people to have empathy. To be compassionate. To be resilient in pursuit of advancing access for the ALS community. I’ve always looked at Steve as being the ultimate connector. Him and Michel, living such a tough life with ALS, doing it in such a joyous way and being honest about the struggles. It’s a beautiful thing.”
To learn more about Steve and Team Gleason, click here.
What to Do Next:
