NFL hero Steve Gleason battles ALS with cutting-edge tech 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.”

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