Eyes on the prize
How NFL hero Steve Gleason is battling ALS with cutting-edge technology and the power of human spirit.
Spokane’s 3rd annual Gleason Fest was billed as a “grassroots, indie music festival,” but everyone there knew something more profound was afoot.
As I watched the sun set over the outdoor stage at Division and Main Street, Lukas Nelson (yes, Willy’s son) played to the crowd like a man possessed. He sweated out every note of his new songs and blues-tinged renditions of Paul Simon and Tom Petty classics.
Steve Gleason – the Spokane-born NFL cult hero and festival namesake – sat onstage in his wheelchair, a few feet to Nelson’s left. The mayor of Spokane, childhood friends and close family members flanked Gleason at different points during the set.
His young nephew, Finn, wore nothing more than shorts, an oversized fedora and a Team Gleason sweatband as he danced frenetically beside the bassist.
“It’s all about camaraderie. It’s about friends and family and music,” said Gleason.
I saw numerous parents introduce their toddlers to each other. I saw people who have been friends for over 30 years toast with Gleason-themed beer cans. I saw former Division I football players cry.
It is obvious that people are moved by how Gleason has faced amyotrophic lateral sclerosis (commonly known as ALS, or Lou Gehrig’s), the disease that has robbed him of his ability to speak, move so much as a finger or breathe without a respirator.
But I came to understand that the driving inspiration behind Gleason Fest and the greater legend surrounding Steve Gleason is, in fact, how he has faced life.
Time and again, Gleason has channeled his passion for life to exceed expectations – not just expectations for himself, but raising up whole communities around him.
“Steve’s a natural uniter,” said Clare Durrett, associate executive director of the Team Gleason foundation. “He has very high standards for himself and an incredible energy that creates passion in others. I’ve never seen anything like it.”
Now, some three years since his ALS diagnosis, Gleason continues to beat the odds and galvanize people to action. Among other lofty goals, he and Team Gleason are collaborating with the tech industry to create new technologies, like a wheelchair that can be controlled with your eyes, to improve the lives of those suffering from neuromuscular diseases or other injuries.
“I realized pretty quickly after my diagnosis that technology would have to become an extension of myself,” Gleason explained using eye-gaze technology to input sentences into his Surface Pro 3 tablet. “As I’ve often said, until there is a medical cure for ALS, technology will be that cure.”
Gleason’s wife Michel added, “Steve’s never sold on status quo. He challenged life before ALS, and he continues to love and experience life. He has challenged the tech world, the world of research, and who knows what he'll challenge next.”
Gleason is perhaps best known as the undersized-NFL-safety-who-could. He provided New Orleans with its first moment of unbridled public joy after Hurricane Katrina when, at the beginning of the Saints’ first game back in the Superdome, he blocked a punt that was returned for a touchdown. He’s now an icon to Saints fans and many of the people of New Orleans.
In front of the Superdome, there’s even a bronze statue of Gleason diving for his famed block. It bears the title “Rebirth.” In a typically selfless way, Gleason said, “The statue is a symbol of the commitment of the people in the region who chose to return and rebuild. Their strength was far greater than that of any of the players on that field.”
But just because there’s a statue of that play doesn’t mean it’s the only time Gleason had that level of impact on those around him. At Washington State University (WSU), he helped lead the team to the Rose Bowl for the first time in 67 years while earning academic honors in management information systems and entrepreneurship.
At Spokane’s Gonzaga Prep high school, he toppled school football records and made many of the life-long friends who now organize Gleason Fest. “In the halls of Prep, I learned the value of community,” said Gleason. “I learned that by giving yourself to others, far more will come to you in return. And I learned that our being, our power and our potential, is not contained in our physical bodies but rather in our mind and our spirit.”
Our potential, is not contained in our physical bodies but rather in our mind and our spirit.
High school and WSU friend Jimmy Ramirez, who is one of the the main organizers of Gleason Fest, remembered, “At Prep, Steve was the ultimate ‘includer.’ He always stuck up for the little guy and he never defined himself as just an athlete.”
Indeed, Gleason’s interests ranged from reading the Bhagavad Gita to practicing yoga to surfing with his brother, Kyle, in Indonesia during the off-season. After eight years in the NFL (not too shabby for a player who originally went undrafted in 2000), Gleason backpacked around the world with Michel and pulled down an MBA from Tulane. Steve and Michel Gleason’s future was wide open, until he started to notice a peculiar twitching in his upper arm and chest muscles.
While on a vacation, he suddenly found himself unable to do even three pull-ups in a friendly competition with his brothers-in-law. He dismissed the weakness as the effect of overdoing it in a charity bike ride and went on with his day. But after the twitches continued, he was forced to seek medical help.
The Gleasons were told it could be a number of different health issues, the worst-case scenario being ALS.
He put everything on hold and visited top medical experts across the country, eliminating potential causes one by one. Soon, he was having difficulty lifting his fingers and toes – a common early symptom of ALS.
By the time Steve and Michel Gleason traveled to San Francisco for final ALS testing, the diagnosis had already become apparent. The night before they met with the doctor, Gleason broke down in tears.
The body that Gleason had pushed to such heights would now start to work against him. He would lose his ability to run, then walk, then move at all. However, his senses and mind would remain intact.
ALS ravages nerves in the brain and spine. The neurons that transmit impulses from the brain to the muscles atrophy and die. No one knows the cause of the disease and some 90 percent of people with ALS have no family history of it. Most devastating of all, there is no cure.
Traditionally, an ALS diagnosis is considered the beginning of the end. But Gleason decided the diagnosis was all the more reason “to get ready to live.” The birth of a son, Rivers, gave Gleason even more reason to make the most of every moment.
He convened a group of close family and friends to advise him on how to organize finances for the battle ahead, and to determine how to best make the public announcement of his illness. As the focus moved beyond Gleason and on to the greater issue of combating ALS, the meeting set the stage for what was to become Team Gleason.
Gleason’s father-in-law, Paul Varisco, was nearing retirement after a long career in retail and the restaurant supply business. Varisco remembers, “We started with four volunteers and the goal of taking people with ALS on adventures and helping to provide them with assistive technology so that they could better enjoy their lives.”
Now executive director of Team Gleason, Varisco said, “We had no idea that it would grow into raising this kind of money toward a cure and helping to create new technology. And I never thought this would become a whole new career for me.”
Then again, Varisco is not that surprised. “During training camp for the Saints, Steve used to stay late and clean up the locker room,” Varisco said. “He always helped other people. It’s coming back to him because he’s given so much.”
Durrett, Team Gleason’s other associate executive director, came from outside the family. A Louisiana native, she’d worked in political consulting and public affairs in Texas for many years prior to returning to New Orleans to play a role in post-Katrina philanthropy.
Durrett was at the Superdome when Gleason blocked the punt and was there again when he made his public announcement of his ALS diagnosis. “I felt a lightning bolt through my heart and realized that I needed to be involved,” she smiled. “I knew he was going to have a big effect on the ALS community. I stalked Steve and Michel and offered to volunteer my services.”
Team Gleason kept growing in scope and exceeding expectations. Gleason and another man with ALS ascended part of the Inca Trail to Machu Picchu, along with Gleason’s close friend and former Saints teammate Scott Fujita. To celebrate the one-year anniversary of his diagnosis, Gleason went skydiving.
It was at the 2013 Social Innovation Summit at the United Nations in New York City that Yvonne Thomas saw Gleason present about his work with Team Gleason.
Thomas had attended WSU at the same time as Gleason, and, although they didn’t know each other directly, she knew of him. She also happened to be a senior program manager of Microsoft’s Citizenship organization.
Thomas had her own lightning-bolt moment. “He’s the kind of guy who simply refuses to give up. Instead, he sees opportunity and you want to be part of that,” she said. “I was inspired by him to think about what’s possible and knew that he and Microsoft together could make a tangible difference for people with ALS and other medical issues.”
I was inspired by him to think about what’s possible and knew that he and Microsoft together could make a tangible difference for people with ALS and other medical issues.
Gleason’s initial involvement with Microsoft was using eye-gaze technology to interface with a Windows tablet. He experimented with a Surface 2 and a Swedish-made Tobii sensor that utilizes “projection patterns and optical sensors to gather data about eye position, gaze direction or eye movements.” In other words, it follows his corneas to control the cursor on the screen.
He was able to use the technology to write out his thoughts on the Surface keyboard. He could then tweet or respond to emails and, best of all, give voice to his words through a speaker. While it wasn’t a flawless solution, he reclaimed some of his ability to communicate. Gleason told this story in a Microsoft ad that ran during the 2014 Super Bowl.
Team Gleason kept in touch with Thomas and continued the conversation about how to improve the technology.
Some months later, Microsoft’s first company-wide Hackathon was approaching. Many thousands of employees from across the company planned to use existing products to create something new and innovative. Some 3,000 projects would compete for top recognition and the chance to become a Microsoft product.
Team Gleason was connected with Jenny Lay-Flurrie, Microsoft’s Director of Accessibility, to see if some of Gleason’s tech challenges could be tackled by a Hackathon team. Lay-Flurrie deadpanned, “I’m British, so I don’t do NFL. I didn’t really know much about his story.”
Lay-Flurrie already had a number of accessibility projects lined up for the year. She is deaf, so accessibility technology is much more than just a job to her. But she said, “I started this amazing conversation with Steve and he got right to the point about what wasn’t working, what was pissing him off and what could be done better.”
The two boiled down Gleason’s list to the following core objectives:
- I want to be able to play with my son.
- I want to be able to talk more easily with my wife.
- I want to be able to move my wheelchair independently
- I want to be able to power on and off my Surface independently
For the Hackathon, Gleason and Lay-Flurrie set out to create an “always on” solution for the Surface and improve the ability to communicate with eye gaze. Win or lose, they could pull together some heavyweight brainpower to entertain a solution.
Steve, Michel and Team Gleason arrived at the Microsoft campus in Redmond, Washington, on a Monday in July. Lay-Flurrie said, “When we met in person, the connection was instant. We got them up to the room and Steve goes, ‘So what’s with the British accent?’
“I asked, ‘What do you mean?’
“‘Well, I thought you were deaf? You can’t really be deaf then.’
“He instantly went there and kept going. Then he pulled up his voice machine and switched it to a female British accent. Meanwhile, Michel was busy convincing me to teach her all of the ways to swear in sign language.”
Lay-Flurrie continued, “I feel like I became part of the family within 20 minutes. They pull you in. I would do anything for them, after only knowing them in person for a few hours.”
After establishing a rapport, Lay-Flurrie said, “Steve’s inner geek came out. He questioned everything. He wanted us to do everything in front of him so he could learn it. I’ve watched a lot of people use eye gaze. He is the fastest I’ve ever seen.”
Matthew Mack, accessibility lead at Microsoft, was brought in to run the day-to-day operations for the hack team. He said, “I was intrigued by the complexity of the problem and Steve's passion for life in the face of such extreme adversity. People with ALS are dependent on technology and that dependency is so fragile. It is the difference between a rich life experience and having even basic communication be a major obstacle.”
Mack managed the massive turnout of Microsoft employees interested in working on the project. He also recruited a handful of specific experts, like Gershon Parent, an incessant tinkerer and experienced engineer who was working on autonomous robots.
Parent said, “I was busy doing robotics stuff like obstacle avoidance and other safety aspects. To be honest, I’d heard that eye gaze was an emerging technology, but I was barely aware of its existence.”
Parent wasn’t planning to participate in the Hackathon (working on hacks is something he does in much of his free time already) but changed his mind when Mack told him about Gleason.
“Steve came in asking to control a wheelchair with his eyes. His energy was essential. We wanted to do it for him. He was really passionate and knew a good deal about technology.”
What became known as the “Ability Eye Gaze” hack team consisted of over forty Microsoft experts from a variety of groups and disciplines, including people on the Kinect team who know all about sensors and Natural User Interface, experts in storage, people from Surface, blue-sky thinkers from Microsoft Research and even an engineer from Bing with a background in micro-controllers.
The hack team stayed up all night building a distributed system and fitting together each piece of the puzzle. “It seemed like a long shot at first, but once we pulled the right people together, I started to believe we could make it happen. It was just one of those things where we’d needed Steve to come in and connect the dots,” said Parent.
By the time that Gleason returned to meet with the team, they’d been working for two days straight. They were re-wiring right up until the last minute and few had slept more than a quick nap on the couch.
As the wheelchair wasn’t working yet, they demonstrated eye-gaze remote control on a small robot instead. “Steve was controlling the robot with his eyes, and his son Rivers started playing with it, running and spinning around on the floor,” said Parent. “It was a great moment as Steve could play with Rivers down there on his level.”Left: John Blakesley performs with Hey! Is For Horses at Gleason Fest Right: Jimmy Ramirez
Parent’s eyes got a little moist, “And then, about 30 seconds before Steve planned to leave, we got the wheelchair working. He was the first person to ever control a wheelchair with our hack. Everyone was so excited; we were exhausted but felt like we could’ve kept working on it for another 48 hours if we’d needed to. I’ve been involved with lots of hacks, but, for me, this was extremely meaningful.”
Lay-Flurrie adds, “By the start of the Hackathon, we’d already found a way for Steve to keep his Surface always on. By the end, we had a viable wheelchair that could be driven with the eyes. We’d achieved more than we thought possible. Winning the Hackathon was the last thing on our minds.”
And then, a crazy thing happened: They actually won the Hackathon.
Microsoft CEO Satya Nadella announced that the Ability Eye Gaze team took the Grand Prize, beating out thousands of other projects.
In the acceptance speech, Mack discussed how an American dies of ALS every 90 minutes. Mack said. “But we have the ability to give them quality of life… with Satya’s help we can take the robotics, we can take the eye-gaze technology, and we can move that into mainstream, and we can give people a quality of life so that they can realize their independence.”
Lay-Flurrie grinned, “When we won, I immediately called up Team Gleason. It was blissful to be able to tell them. And for me it was best to know that we put a smile on Steve’s face.”
And the Hackathon triumph coincided with the unexpected fundraising phenomenon of the icebucket challenge.
As a tidal wave of icebucket challenges washed across social media, Gleason took to Twitter to dare Nadella to have a bucket of icewater dumped over his head to raise awareness and money to fight ALS. Not stopping there, Gleason went on to challenge his friends who represent the music community (Mike McCready, guitarist of Pearl Jam), sports (Drew Brees, quarterback of the Saints) and politics (Mitch Landrieu, mayor of New Orleans).
The ALS Association said, “As of August 29, the Association has received $100.9 million in donations compared to $2.8 million during the same time period last year (July 29 to August 29).” The icebucket challenge has reconfigured the ALS fundraising landscape over the near term and has permanently increased the level of awareness about the disease. However, social media phenomena tend to be short-lived. Team Gleason and company are already looking over the horizon.
On the technology front, the wheelchair hack is just a start for Gleason. He said, “There are groups all over the world working on brain interface, wearable options for eye tracking and virtual abilities.”
He argued, “As someone who thrives on being outside, a priority would be technology allowing me to communicate while in the outdoors [eye gaze can’t track the contrast between the corneas and white sclera of the eye in bright light]. The eye-tracking wheelchair steering will be hugely helpful but even more so with a wearable.”
Much of his interest in technology revolves around being able to better interact with Michel and Rivers. Gleason said, “The profound effect of fatherhood is hard to envision until you hear the words ‘you will be a father.’ It happened almost immediately, has grown and continues to grow each day I am with my son.”
As a result of his collaboration with Microsoft, Gleason and other core Team Gleason members had a personal meeting with Bill Gates. “I loved showing him how my technology works, and particularly enjoyed geeking out with him, as we brainstormed what is possible in our future,” said Gleason. “We are working hard on a few ‘impossible’ initiatives including: developing innovative, cutting-edge technology that impacts not only disabled people but also the general marketplace and ending ALS. Who better to solve what most people see as impossible problems than Bill Gates?”
Team Gleason has been fortunate to connect with some of the world’s leading minds in technology, medical research and also with those most interested in finding a cure: the patients with ALS.
“Last year, we put all of these different people in a room at the Team Gleason Summit and they came out with a plan to end the disease called Answer ALS,” Gleason explained. “The Answer ALS goal is the largest collaborative and collective effort in the history of the ALS. It is also the largest financial commitment at over $500 million. But, one thing we do know, ALS is not incurable, it’s underfunded.”
Back at Gleason Fest, Lukas Nelson played a few encores and bid goodnight to the crowd. People headed home, but the experience was not forgotten.
When you’re faced with an allegedly terminal disease, living becomes your focus, and I believe passion for life can be contagious.
When asked what has most surprised him about people’s response to Gleason Fest and all of his work, Gleason said. “I’ve always known people to have the capacity for amazing acts. In launching Team Gleason, we wanted to inspire people to remember to live. People inherently know how to live; they just tend to forget. When you’re faced with an allegedly terminal disease, living becomes your focus and I believe passion for life can be contagious.”
And his influence does go well beyond the ALS community. Michel Gleason said, “We get letters from all over the world from people who say they love or admire Steve. Everywhere we go, we meet someone who has been touched by his story. Some days are just really bad and then we randomly run into someone who will tell Steve how his story empowered them to do something they were scared to do or how it changed them somehow. In those moments, we feel blessed, despite him having ALS.”
Gleason’s close friend Jimmy Ramirez busied himself cleaning up after Gleason Fest. He seemed more energetic than when we’d met during set-up some 12 hours earlier. “At first we were all upset and angry when Steve got this diagnosis,” he said. “But now it’s almost the opposite. He is the ideal person to share this message with the world. To make a change. He’s got a lot to teach.”
I wondered if I was also falling under the spell of Gleason. I thought about volunteering to write for Team Gleason and becoming part of this movement that is so much more important than any one individual.
Ramirez looked me in the eyes, “You don’t feel like you’re writing just any story, do you? I can tell, Steve’s gotten to you too.”Originally published on 9/15/2014 / Photos by Lucien Knuteson / © Microsoft