From adversity, heroes are born.
About Steve Gleason
Steve Gleason is a name that resonates far beyond the football field. A former NFL player for the New Orleans Saints from 2000 to 2008, Steve is best known for his iconic blocked punt in the first game played in the Louisiana Superdome after Hurricane Katrina—a moment that symbolized hope and resilience for the city of New Orleans. But Steve’s story extends far beyond this historic play.
In January 2011, at the age of 34, Steve was diagnosed with Amyotrophic Lateral Sclerosis (ALS), a terminal neuromuscular disease also known as Lou Gehrig’s disease. Faced with this devastating diagnosis, Steve embraced a new mission: to show that people with ALS can not only live but thrive and to inspire others facing similar challenges.
“People were simply expected to fade away quietly and die, that was not acceptable to me. That is not OK.”
Alongside his wife, Michel Varisco, Steve founded Team Gleason in September of 2011, a nonprofit organization dedicated to helping individuals with ALS lead purposeful and fulfilling lives. Since its inception, Team Gleason has provided over $55 million in adventure, technology, equipment, and care services to ALS patients and their families, while also advocating for the resources and research necessary to end the disease.
Steve’s advocacy efforts have gained national recognition. His first major story was aired on NBC during a Peter King feature before the Super Bowl on February 5, 2012. Since then, Steve’s story has been featured on major platforms including NFL Network, ESPN, HBO, ABC, CBS, FOX, and CNN, as well as in publications like GQ, Forbes, and Rolling Stone.
“Steve Gleason embodies the heart and soul of what it means to be a champion. His fight against ALS and his work with Team Gleason are incredible,” said Sean Payton, former New Orleans Saints Head Coach.
In July 2012, the unveiling of the “Rebirth” Statue by sculptor Brian Hanlon commemorated the punt blocked by Steve Gleason in a game against the Atlanta Falcons. This event occurred at the end of the first drive of the first game played in the Superdome after Hurricane Katrina, in September 2006. The bronze statue, commissioned by Saints’ Owner/Chairman of the Board Tom Benson, is a tribute to both the reopening of the iconic domed stadium just over one year removed from the devastation inflicted by Hurricane Katrina (2005) and the career and lifetime accomplishments of Gleason. “To have a statue of you up 100 years from now at the Superdome, I think that’s amazing,” Gleason said. “But I just don’t want this to be about me and that play. I want it to be about what the play symbolized, which was a commitment by this community to rebuild. This statue is about coming through adversity. It’s about finding your heroes. It’s about commitment and a rebirth for all.”
In 2013, Steve and Team Gleason embarked on a remarkable adventure to Machu Picchu, gaining national and international attention for ALS.
Pearl Jam has been a vocal supporter of Steve Gleason and Team Gleason. Lead singer Eddie Vedder frequently mentions Steve at Pearl Jam concerts and praised him, saying, “Steve Gleason is one of the most courageous people I’ve ever met. His fight against ALS and his efforts through Team Gleason have shown the world what true strength and resilience look like.” In 2013, Steve had the opportunity to interview Pearl Jam, a testament to their deep connection.
In 2014, Steve, Michel, and their son Rivers starred in Microsoft’s first Super Bowl commercial. Seven months later, Steve challenged Microsoft to create a way to drive his wheelchair with his eyes.
In 2014, the ALS Ice Bucket Challenge went viral, bringing unprecedented awareness and funding to ALS. Steve Gleason participated in the challenge, helping to amplify its impact. The Ice Bucket Challenge raised over $220 million globally, significantly boosting research and support initiatives for ALS. Later that year, Steve was named one of Sports Illustrated’s Inspirations of the Year along with Pete Frates for their efforts of bringing awareness to the disease.
He has spoken at prestigious events including Microsoft conferences and United Nations Social Innovation Summits.
Steve’s relentless pursuit of progress led to the creation of the Steve Gleason Act in 2015, which ensured that Medicare beneficiaries had access to essential communication devices. This legislation was later succeeded by the Steve Gleason Enduring Voices Act in 2018, further extending support for those with ALS. Steve and Team Gleason were instrumental in pushing the Louisiana Right to Try Act, which was signed into law.
U.S. Senator Bill Cassidy praised Steve as “a national hero,” while Representative Steve Scalise highlighted how “Steve Gleason’s fight against ALS and his work with Team Gleason have brought hope and support to countless individuals facing similar battles.”
Steve Gleason’s journey with ALS and his unyielding spirit were chronicled in the 2016 documentary “Gleason.” The film provides an intimate look at his life, from his football career to his battle with ALS, his family life, and his advocacy work. It received critical acclaim and brought widespread attention to the realities of living with ALS. The movie received outstanding reviews at the Sundance Film Festival and was a contender for the 2016 Academy Awards.
In 2019, as a result of Steve’s 2014 challenge to Microsoft, eye-tracking technology for power wheelchairs was developed, a breakthrough that has made a significant impact on the lives of those with severe physical disabilities. Tolt Technologies released the Ability Drive, allowing pALS to use eye-tracking control systems to drive their power wheelchairs. Bill Gates, Co-Founder of Microsoft, acknowledged Steve’s influence in a blog post, stating, “Steve Gleason’s bravery and spirit in the face of ALS are nothing short of extraordinary. His challenge to us at Microsoft to create technology for those with severe disabilities led to groundbreaking advancements that will benefit many.”
Steve has led the charge in innovative assistive technology.
In recognition of his contributions and impact, Gleason has received numerous accolades, including the U.S. Congressional Gold Medal, one of the highest civilian honors in the United States. On January 15, 2020, Congressional leadership, Members of Congress, representatives from the National Football League, and other distinguished guests gathered in Statuary Hall in the U.S. Capitol for the Congressional Gold Medal Ceremony honoring Steve Gleason. This award is the nation’s highest civilian honor, for his advocacy efforts and remarkable courage in the face of ALS. Awarding the honor requires bicameral approval, as well as Presidential approval. “It’s fitting we honor Steve Gleason in Statuary Hall, this pantheon of patriots, where great Americans are immortalized in marble and bronze,” said U.S. House of Representatives Speaker Nancy Pelosi. “Talk about feeling undeserving! The list of past winners is filled with enlightened and powerful giants of humanity,” Gleason said in a statement. “I am honored and accept the Congressional Gold Medal for all the families who have been diagnosed with ALS, as well as anyone struggling to overcome life’s inevitable adversities.” While other athletes have been given the Congressional Gold Medal, such as Jackie Robinson and Jesse Owens, Gleason is the first professional football player to receive the award.
He was also named a “Hero of the Year” by Sports Illustrated and received the George Halas Award from the Pro Football Writers of America for his perseverance and dedication.
Steve’s memoir, “A Life Impossible: Living with ALS: Finding Peace and Wisdom Within a Fragile Existence,” co-authored with sportswriter Jeff Duncan, was released in 2024. This powerful and inspiring book delves into themes of love, resilience, and the search for meaning amid adversity. “Writing this book was an exercise in vulnerability and imperfection, with the intention of offering kinship with those navigating the foggy unknown,” Steve reflects.
On July 11, 2024, Steve received the Arthur Ashe Award for Courage, recognizing his bravery and tireless efforts to advance ALS research, advocate for patient rights, and support those living with the disease through Team Gleason’s wide-reaching programs.
When Steve is not using his communication device, he communicates using a low-tech solution called a letter board, or “eye gaze board,” in which the alphabet is split up into six sections. Gleason spells words by moving his eyes around the imaginary board hanging between him and his care team. He affectionately refers to his unique way of expressing affection as “Fo to Fo,” short for “forehead to forehead,” a gesture of connection that has become a cherished part of his interactions.
Steve’s life is a testament to the power of resilience, determination, and the human spirit. His efforts have not only provided tangible support and hope to those living with ALS but have also inspired countless individuals around the world to face their own challenges with courage and fortitude. His legacy continues through the ongoing work of Team Gleason and the lives he has touched through his advocacy and example. Steve’s greatest personal triumphs are found in his role as a father to Rivers, born in 2011, and Gray, born in 2018. Steve and Michel’s love and commitment to their family exemplify the strength of spirit that defines Steve’s approach to life and his mission.
Photo credit: Microsoft
Team Gleason Story
In one of Team Gleason’s first meetings, Steve declared,
“There Will Be No White Flags.”
He meant it and so do we.
“I believe my future is greater than my past.”
– Steve Gleason
No white flags!
