Living with ALS: Congress honors Steve Gleason’s work to defeat ALS
CHARLOTTE, NC: Today’s ALS story is not new, but it is an update about one man’s inspirational crusade against the crippling terminal disease so familiarly associated with onetime New York Yankees first baseman, Lou Gehrig.
Steve Gleason is a former professional football player for the New Orleans Saints who is probably best known for blocking a punt in a game against the Atlanta Falcons in 2006. That block, in the team’s first home game in the Superdome following Hurricane Katrina, becoming a symbol of recovery for the city of New Orleans.
The undrafted free agent safety retired from the NFL after eight seasons in 2008. Three years later, he learned that he had been diagnosed with amyotrophic lateral sclerosis (ALS).
Steve Gleason, at age 34, was now engaged in the biggest challenge of his life.
Whatever the reasons may be, as research continues and interest grows in learning more about ALS, it appears that two especially vulnerable professions where the affliction is emerging are in athletes and in military personnel.
With greater emphasis than ever before being placed on concussions, particularly in sports, ALS seems to be a potentially prime possibility for the disease.
Most patients are unfamiliar with the four-word “kiss of death” ALS phrase “two to five years” until they hear it for the first time. After that, its an expression they never forget.
Six weeks after his ALS diagnosis, Steve Gleason and his wife Michel learned that she was pregnant with their first child.
That was motivation enough for Steve and Michel to establish Team Gleason, an organization:
“Committed to providing for and finding solutions for those living with ALS and other related neuromuscular diseases. Our focus is on those with ALS and also those who care for them. Team Gleason’s small staff and volunteers work tirelessly every day to empower those living with ALS to live with continued purpose and as productively and independently as possible.”
Gleason quickly established a six-word motto of his own when he declared in one of Team Gleason’s first meetings that “There Will Be No White Flags.”
Today Team Gleason is a recognized charitable 501c3 non-profit corporation with the mission to:
“Help provide individuals with neuromuscular diseases or injuries with leading edge technology, equipment and services.
To create a global conversation about ALS to ultimately find continued solutions and an end to the disease.
To raise public awareness toward ALS by providing and documenting extraordinary life adventures for individuals with muscular diseases or injuries.”
Since Team Gleason’s inception, the group has spent millions of dollars providing equipment, technology, services, care, life-changing adventures and more, having an impact that goes well beyond its direct mission.
Key among Team Gleason’s achievements is when the Steve Gleason Act was signed into law by Congress (2015), ensuring access to all people who need assistive communication devices.
In 2016, the documentary film Gleason was featured during the Sundance Film Festival.
The movie had the two-fold purpose of the ongoing effort to maintain and increase awareness about ALS as well as providing a visual diary for Steve’s children to help them better understand the father they will one day only remember as someone who in their formative years of life was a person who they only knew as being physically “broken.”
For his relentless battle to defeat the disease that will one day prematurely steal Steve Gleason’s life, he was presented the Congressional Gold Medal on Jan. 15 in Washington, D.C. for his contributions to ALS awareness, becoming the first NFL player ever to receive the award.
A Congressional Gold Medal is an award bestowed by the United States Congress. It is extended to individuals from all walks of life and in the late 20th century also to groups.
The congressional medal seeks to honor those “who have performed an achievement that has an impact on American history and culture that is likely to be recognized as a major achievement in the recipient’s field long after the achievement.”
The Congressional Gold Medal along with the Presidential Medal of Freedom Congressional Gold Medal are the two highest civilian awards in the United States.
In the meantime,
“Steve and Team Gleason continue to push the boundaries of what is possible in living with ALS. Whether it be partnering with the world’s largest tech companies, challenging legislation, innovating for new technology or creating life-changing experiences, the group strives to find solutions where others see only problems.”
As important and inspirational as the Congressional Gold Medal might be, Steve Gleason would gladly relinquish his award in exchange for an ALS cure.
You see, as Steve Gleason sees it, surrender is not an option. He has already beat the odds, surviving nine years post-diagnosis, seeing his child grow up
“There Will Be No White Flags.”
About the Author:
Bob Taylor is a veteran writer who has traveled throughout the world. Taylor is an award-winning television producer/reporter/anchor before focusing on writing about international events, people and cultures around the globe.
Taylor is the founder of The Magellan Travel Club (www.MagellanTravelClub.com)
Editors Note: Support Bob’s GoFundMe to give him a hand up