7 Things to Know About Steve Gleason, Living With ALS

Last weekend, we watched the latest Netflix DVD.com arrival, Gleason. This documentary, about retired New Orleans Saints defensive back, Steve Gleason, is a love letter to his son, and so much more. It’s a story of courage, hope, and grit.

Diagnosed with ALS (amyotrophic lateral sclerosis) in 2011, Gleason began a video diary for his then unborn child, and along with this project, grew a movement called Team Gleason. The non-profit’s mission is to increase awareness of ALS, search for a cure, and provide relief, often in the form of technology, for those living with ALS.

Here are seven things to know about both Steve Gleason and Team Gleason.

1. Born March 19, 1977 in Spokane, WA, Steve is married to Michel Rae Varisco, and they have a son, Rivers, born in 2011.
2. Steve played for the New Orleans Saints from 2000 to 2008, and is best known for the punt he blocked against the Atlanta Falcons during the first game played in the Superdome after Hurricane Katrina.
3. The result of five years of filming, a documentary, Gleason, was included at the Sundance Film Festival. It was considered, but not nominated for an Oscar. Gleason was gracious and congratulated those that advanced to nomination.
4. In 2014, Steve underwent a tracheotomy to relieve breathing difficulties, which has allowed him to live, and thrive, with ALS. Ninety-five percent of patients with ALS opt out of the procedure.
5. Steve, along with his friends and family, founded Team Gleason in 2011. It operates as the Gleason Initiative Foundation. A 501(c)(3) organization, and donations to Team Gleason are tax deductible.
6. Team Gleason has provided more than $3 million in technology aids for pALS (people living with ALS). The technology includes devices that operate with eye-tracking software and allow pALS to communicate with the world. Steve uses this type of device to speak, operate his computer, drive his wheelchair, and much more. His electronic voice is his own, because he painstakingly captured words while he still could speak.
7. In July 2015, the Steve Gleason Act became law. It amended the Social Security Act to provide Medicare benefits for speech-generating devices and removed the rental cap for speech-generating medical equipment. This restored communication ability to many pALS who had been left without a way to communicate with the world when their benefits ran out.

So there you have it, seven things to know about Steve Gleason and Team Gleason. Their motto is “No White Flags.” Steve hasn’t given up the fight and remains a vital part of his wife’s and son’s lives.

Steve’s eye-tracking technology software allows him to stay connected with the world, and he’s active on Twitter as @teamgleason. On October 3, 2016, he shared a video clip from Dazed and Confused on Twitter, referencing Wooderson’s sage advice on life. Steve tweeted:

Attention journalists. Breaking news: I’m not “afflicted” or “suffering”. I’m L I V I N.

-SG

‪#AwesomeAintEasy

Steve has already outlived many people, who had no “affliction” to speak of and didn’t realize that none of us is guaranteed a tomorrow. Looking to the future, on December 5, 2016, Steve tweeted:

While I’ve thought about how I might die, my primary focus is on how I will live.

Ann Silverthorn

Disclaimer: I am a member of Netflix’s DVD.com Director’s program, which gives me free access to movies. If you sign up with my referral link, I may receive a referral reward.