Steve Gleason made a name for himself on the football field but his most enduring contribution may be tackling ALS.
The statue built in his honor outside the New Orleans Superdome depicts Steve Gleason ’00 on the gridiron doing what he does best: pushing himself harder and, in turn, inspiring others.
That personal drive didn’t stop when Gleason left the National Football League in 2008. Nor when he was diagnosed in 2011 at the age of 34 with ALS, the terminal neuromuscular disease that has since left him immobile and reliant on eye-controlled technology to communicate.
Gleason, who helped take WSU to the Rose Bowl in 1997 and whose diving punt block for the New Orleans Saints in 2006 rallied the hurricane-ravaged city’s down-but-not-out spirit, confronted the diagnosis the way he deals with any challenge. He tackled it head on.
His foundation, known as Team Gleason, has raised millions for research and advocacy. He’s helped inspire technological innovations, including open-source research projects now underway at WSU into specialty tablet computers and wheelchairs controlled by eye movements.
And, last year he and his supporters managed to persuade a divided U.S. Congress to change Medicare rules to cover assistive communication technology for those battling degenerative neuromuscular diseases.
For a guy who’s no longer able to move on his own, Gleason still can’t be stopped.
“Steve has always set these high goals for himself,” says his mother, Gail Gleason, who serves as a senior learning services specialist for WSU Athletics. “He doesn’t expect others to do the same but he does invite them to follow along with him if they want. It’s not that he sets out to be a leader, it’s more that he’s a friend.”
Those friends have rallied around him.
Team Gleason chapters throughout the country are helping host fundraisers and ALS awareness programs. A golf tournament in Spokane, for example, has drawn pro athletes and others from across the nation.
But it’s Gleason, who also played baseball at WSU, who tends to get the biggest results.
“He’s always made everybody feel like his best friend,” says Rian Rosa Emmerson ’00, who attended WSU with Gleason and whose husband, Grady Emmerson ’99, was on the Cougar football team with him.
“If anyone could have brought the kind of attention to ALS that’s been needed, it’s Steve,” she adds. “You never wish anything on anyone but with Steve you know he’ll find a way…because he always does.”
The past year alone marked some major milestones in Gleason’s advocacy.
The first came when President Barack Obama signed into law the Gleason Act, which covers assistive technology enabling those with neuromuscular diseases to communicate. The proposal won overwhelming support in both congressional chambers.
“Thousands of Americans living with degenerative diseases can have the peace-of-mind today that their voices will continue to be heard,” said U.S. Rep. Cathy McMorris Rodgers, who represents Eastern Washington and was a cosponsor of the Gleason Act.
Another came in the fall, when Johns Hopkins University, Cedars-Sinai Hospital in Los Angeles, and Massachusetts General Hospital announced an unprecedented ALS research project. Funded largely with $20 million from private donors, including the NFL and PGA Tour, the effort was inspired by Gleason’s Answer ALS Initiative.
His no-white-flags approach to ALS advocacy has, along the way, become an inspirational message for all to live life to the fullest.
That wasn’t lost on pioneering grunge band Pearl Jam, which performed a sold-out 2013 concert in Gleason’s hometown of Spokane. Lead man Eddie Vedder, a Team Gleason backer, introduced Gleason and his advocacy efforts to the crowd.
Gleason had chosen the concert set list but Pearl Jam had a surprise for him. As the audience chanted his name, Vedder described Gleason’s resilience and refusal to give up even in the face of overwhelming odds, then announced one more song.
It was the 1989 Tom Petty classic, “I Won’t Back Down.”