The Gleason Initiative Foundation
Since being diagnosed with ALS, Steve has continued to live a purpose-driven life by setting up a foundation to help others with ALS and by inspiring everyone who comes into contact with him.
The number of reasons Steve Gleason deserves this award could never be limited to 500 words, but Steve isn’t one that is known to be limited, as amyotropic lateral sclerosis (ALS) has also failed in its attempts to restrict his life.
During his stint in the NFL, Gleason is responsible for one of the most dramatic moments in Saints history when he blocked a punt against the Falcons that was recovered for the first Saints touchdown in the Superdome after Hurricane Katrina. With this, he was an immediate legend in the eyes of all New Orleans residents, but it is how he has conducted his life since age 34, when diagnosed with ALS, that makes him the person who deserves this award.
Since being diagnosed, it is his mission to show that patients can not only live but thrive after this diagnosis. While others with ALS accept their assumed limitations and rightfully chose to handle things privately, Steve battles publically. He created a foundation, The Gleason Initiative Foundation (commonly known as “Team Gleason”), to help others with ALS. This foundation provides others with neuromuscular disease and injuries with cutting-edge technology, equipment and services. Steve and Team Gleason recently opened the Team Gleason House, only the 2nd of its kind in the world. The residence is equipped with the latest computer-operated technology to allow individuals with ALS the highest level of independence possible. Team Gleason also hosted a summit in 2013 that included world leaders in ALS. It was the largest single collaborative research effort in the history of ALS..
Steve, Michel (his wife), and Rivers (his son) continue to pursue life adventures despite Steve’s diagnosis but have found that many people with ALS were choosing to accept their assumed limitations. Through Steve and Michel’s inspiration and tireless work, they have helped hundreds of people with ALS experience adventures they never thought possible after their diagnosis.
The manner in which Steve continues to conduct his life inspired President Obama to sign “The Steve Gleason Act” to assure the availability of life-sustaining communication devices.
Few men, not battling disease, will help and inspire as many people as Steve has. Despite his long list of accomplishments (many of which went unmentioned), Steve would tell you his greatest accomplishment and joy is his son, Rivers. I witnessed this first-hand while acting as an assistant coach for Rivers in T-Ball and Baseball. Other parents skipped games for meaningless reasons, but despite the effort it entailed, Steve was there religiously. Most recently, I saw Steve at a game for Rivers that conflicted with the beginning of the Game 7 of the World Series. Steve is a huge Cubs fan, but he chose to watch Rivers play instead watching the beginning of the game. Later that night toward the end of that historic game, Steve displayed his inspirational sense of humor tweeting, “I’m so nervous I can’t move. – SG” Steve personifies courage, leadership, survival, devotion, character, and heroism and thus deserves the “Rare Life Honor.” #NoWhiteFlags