The Future of Assistive Technology
with Blair Casey of Team Gleason
People living with ALS — also known as Lou Gehrig’s Disease — lose their ability to walk, talk, eat, and eventually breathe.
Blair Casey, Assistant Executive Director of Team Gleason, shares how former NFL player Steve Gleason serves as inspiration in the fight against ALS, and how assistive technology is improving life for those living with the illness and other neuromuscular diseases.
Oct 02, 2020
Anderson: Former safety of the New Orleans Saints, Steve Gleason, is best known for blocking a punt that became the symbol of the rebirth of New Orleans following Hurricane Katrina. Five years later, he was diagnosed with ALS. Steve's journey didn't end with his diagnosis. And through his nonprofit, Team Gleason, Steve is inspiring others and leading the charge in innovative assistive technology. Hello and welcome to Comcast Newsmakers. I'm Tetiana Anderson. And with me to discuss the work of Team Gleason and the future of accessibility is Blair Casey. He is the chief impact officer of the foundation. And, Blair, I'd love for you to start by explaining to our viewers what exactly ALS is and why it's so insidious.
Casey: "ALS" stands for "amyotrophic lateral sclerosis." And to simplify it, basically, your brain stops sending signals to your muscles, your muscles stop moving, and therefore your muscles more or less die.
Anderson: So, this is obviously something that Steve is dealing with. And he is also a hero in the eyes of many because of his years with football. Him and his wife, Michel, founded this organization. But I'm wondering how they got to the decision to really go public about this. I mean, is this something that they wrestled with -- taking such a personal tragedy and making it public for the good of others?
Casey: I certainly think, with anything that's personal, as relates to your family, it's something that you want to work through and decide how you want to proceed with the information. In Steve's case, they decided that they'd leverage who he was, what he's accomplished, to change the future of what living ALS was like for everybody else.
Anderson: So, the foundation is obviously doing a lot of good work, and they've got a lot of major partnerships to make that happen -- partnerships with Comcast, Google, Microsoft. And the reason you need those partnerships is because of all this expensive work in assistive technology. I'm hoping you can talk about some of the foundation's biggest accomplishments. What have you come up with, in partnership with these organizations?
Casey: So, leading up to this, Team Gleason has provided over $10 million in technology and equipment, through partnerships with Comcast, Google, Microsoft. We're really leveraging consumer-based products and platforms to give people the accessibility needs that these products should have. And these companies are working on it diligently. Comcast, with an eye-gaze-enabled remote; Google, Euphonia for voice recognition with dysarthria; and Microsoft with the next version of eye tracking for Surface Pro. It's been fantastic. And that's what the industry needs. And as industry experts, as we are at Team Gleason, we can't get enough of this.
Anderson: And it's not just those things that we can see -- those assistive technologies that are changing the lives of people who are living with ALS. You guys are also doing a lot of behind-the-scenes work, including legislation. What are some of the things that you've worked on?
Casey: So, we initially had to pass the Steve Gleason Act in 2015 to help people get communication devices and get the benefit of Medicare. And now we're actually working on a project at ITEM Coalition to make sure that people with wheelchairs get the seat-elevation feature, because currently, it's not covered by Medicare. And this is an item that every human deserves, to be eye level. And we spent quite a bit of money this year, so we're trying to make sure that this gets passed so that people can benefit from that this year.
Anderson: And whether it's the assistive technology that you're working on or the legislation, how important is this to people who are living with ALS? How have you seen these things change their lives?
Casey: I think, with anything in life, you want to be independent and you want to be productive, and everybody wants -- they're looking for purpose. And we all do that differently. But with ALS, you need the technology and equipment to do so, to keep you independent. And I think that's what Steve has pushed us to do, which is, until there's a cure for ALS, technology is that cure. And we've lost quite a few people that we've been close with. And we know that until there is a cure, we need to continue to innovate because it's the only thing that gives people the independence that they deserve.
Anderson: And when it comes to that independence, the things that you've come up with -- the technologies, the legislation, the leadership that you've shown, it's not just for people with ALS. I mean, there's a broad spectrum of others who do benefit. Isn't that right?
Casey: Correct. So, everything that we work on, as it relates to ALS with eye tracking, or we put out a system that allows you to drive your wheelchair with your eyes, everything that we work on, it benefits any neurodegenerative disease, brain injury. But with Team Gleason, what we raise money for and provide is specific to ALS, but our innovation definitely makes a greater impact on the whole community.
Anderson: And I know that you've been with Steve for a very long time. You were with him in the NFL. You were with him for the diagnosis. You're with him through his foundation today. How have you seen ALS change his life over the course of time?
Casey: When Steve was diagnosed, he was starting to lose muscle mass. And if you go from playing in the NFL, where you're an in-shape, athletic guy, to lose that, it's definitely tough. I mean, you jump that mental jump rope that every time Steve saw that he lost something, he found a technology that would give it back, that would allow him to continue to be a better dad and a better husband. And that's really perseverance right there and resilience. And I'm fortunate to be around it. And the world's fortunate to see it through his lens, because it makes people better. And that comes through adversity, unfortunately, in this case.
Anderson: It certainly does, but adversity can lead to good things. And that's what you guys are doing at Team Gleason. And if people want to find out more about all the work you are doing, where can they go look?
Casey: They can go to teamgleason.org and check out all of our ongoing initiatives, the things that we do with people with ALS, as well as any of the projects that we have where people can participate. So go see teamgleason.org.
Anderson: Blair Casey of Team Gleason, thank you so much for being here. Casey: Thank you for having me. And I look forward to, hopefully, doing this again soon.
Anderson: Absolutely. And thanks to our viewers, as well, for watching. For more great conversations with leaders in your own community and across the nation, be sure to log on to comcastnewsmakers.com. I'm Tetiana Anderson.