New Orleanian of the Year 2013: Steve Gleason

Former New Orleans Saint Steve Gleason fights ALS and inspires the world by refusing to bow to a debilitating illness



In 2012, the New Orleans Saints unveiled a bronze statue titled Rebirth — immortalizing former Saint Steve Gleason's 2006 punt block heard around the world. That blocked punt was in the opening minutes of the Saints' first home game inside the Superdome following Hurricane Katrina.

  Gleason, a safety, rushed Atlanta Falcons punter Michael Koenen and knocked the ball toward the Falcons' end zone. Curtis Deloatch scooped it up and easily ran it in for a touchdown. Televisions in homes across New Orleans filled with several uninterrupted seconds of cheers from fans inside the packed Superdome.

  Gleason's play ignited a legendary Saints victory and quickly came to symbolize the region's grit and determination after Katrina.

  Fast forward seven years from that game, and the once wild-haired, burly Gleason is restricted to a wheelchair and communicates with the aid of a computer. He has been diagnosed with amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig's disease, a debilitating illness that atrophies muscles and inhibits voluntary movement.

  In 2008, Gleason retired from his eight-season career in the NFL. He married New Orleans native Michel Varisco and traveled the world. In 2011, Gleason revealed his diagnosis. That same year, Steve and Michel gave birth to their son Rivers. Steve has made dozens of video journal entries for his son.

  Tapping a seemingly bottomless well of strength and courage, Gleason hasn't allowed his illness to extinguish his thirst for adventure, nor has he been shy about living with ALS. He founded the Team Gleason organization to raise awareness of the disease and advocate for a cure. Among other achievements, the nonprofit announced plans last summer to build the Team Gleason House for Innovative Living at St. Margaret's Skilled Nursing Residence. The residential facility, located next to the former Lindy Boggs Medical Center in Mid-City, will help people diagnosed with incurable neuromuscular disorders live more independently.

  Also last year, he wrote an in-depth essay for Sports Illustrated — using his eyes. An eye-tracking computer helps him type. Gleason's motto is "no white flags," and his message of perseverance not only has inspired people diagnosed with ALS worldwide but it also has become a message of hope to all who face struggles.

  "Although we feel good about what we have accomplished, in terms of raising the level of awareness, there is more work to be done," Gleason wrote to Gambit. "One aspect of our mission is to 'help develop and provide leading-edge technology for people with ALS.' Although we have made some good progress on this, we intend to significantly shift the paradigm of what's possible with technology in 2014. I say this all the time, but it's important enough to repeat here: With the right equipment and technology, people with ALS can not only live but be extremely productive for decades."

  Team Gleason has partnered with Washington State University and Tulane University (where Gleason earned his Master of Business Administration degree in 2011) to research and help produce new technologies for people with ALS. Current projects include wheelchairs that can be manipulated using the eyes and typing programs that work outdoors.

  "Most eye-tracking technology uses infrared light to track the user's pupils," Gleason wrote. "The sun's ultraviolet rays are basic kryptonite for eye tracking. I don't believe there should be any excuses or compromises with this technology. People should be able to communicate everywhere, not just indoors.

Rivers Gleason says goodbye to his dad as Steve Gleason sets off on the Ride 2 Recovery.
  • Rivers Gleason says goodbye to his dad as Steve Gleason sets off on the Ride 2 Recovery.

  "Since Lou Gehrig's death there have been no effective medical therapy developments for people with ALS. During the same time period, technological advancements have been, like the technology industry, exponential. Someday everyone will type, play video games and navigate their computers using their eyes or their thoughts."

  Gleason's technological ambitions match his love of adventure travel. In 2013 he participated in a 400-mile bike ride on a custom-made recumbent bicycle for Ride 2 Recovery, which benefitted wounded veterans, shared the stage with his favorite band Pearl Jam and climbed to the ancient Incan city of Machu Picchu in the Andes Mountains with former Saints teammate Scott Fujita.

  Before he trekked to Peru, Gleason — thanks to the international spotlight provided by the Super Bowl in New Orleans — launched a campaign to find a cure for ALS. The campaign led to June's "Summit for a Cure," which assembled a think tank of doctors, scientists and advocates to pinpoint strategies for improving ALS treatments and reducing costs. Team Gleason House was announced at the summit.

  "The newest science now and on the horizon is simply cost prohibitive unless produced on a large scale," Gleason wrote to Gambit. "If the ALS research market was flooded with funds and accountability, I think we would see much more unity and faster results."

  Gleason graduated from Gonzaga Preparatory School in Spokane, Wash., in 1995. In 2013, the school retired his high school football number. He still visits the Pacific Northwest in the summer, but his heart remains in New Orleans — and the Saints organization continues to rally around Team Gleason. Coach Sean Payton escorted Gleason to the field last September to lead the "Who Dat" chant in the 2013 season opener in the Superdome. In April, Gleason announced the Saints' third-round draft pick and closed with a smile and a computer-assisted "Who Dat." He also holds the annual New Orleans music festival fundraiser Gleason Gras, which raised nearly $100,000 for ALS research last year.

  "I am convinced that, had I played in any other city than New Orleans, my life would be far different, for the worse," he wrote to Gambit. "The city is small and resonates of family. Dysfunctional at times, but surely a family. It seems a normality now, but when I first moved to New Orleans I was astonished by the closeness of the families I met.

  "This city breeds and attracts unique people. Bedraggled people who are honest enough to consecrate their shortcomings. Innovative people who see opportunity where others see chaos. Humble people who honor the mosquito and the cockroach. Transparent people who will share with you whether you like it or not. Enduring people who rebuild when their city or their lives fall apart. Fierce people who protect what they love and love a great deal."

  Gleason closed his email comments about New Orleans by echoing words he has used often to inspire his fellow New Orleanians:

  "At Team Gleason we have much to do and many obstacles ahead, but I think there is no stronger power than the power of family. As New Orleanians have proven time and time again, a strong family can overcome anything. I am encouraged and invigorated to continue our mission with the support of this beautiful, powerful, loving family."

  The strength and courage Gleason has shown in the face of ALS have inspired New Orleanians from all walks.

  "Steve is a true inspiration, not only to me but to our city," Saints quarterback Drew Brees said at the groundbreaking for Team Gleason House. "The same qualities that made him a standout on the field are now making him a remarkable advocate for people living with ALS. ... He is a tireless worker. He will never quit. Ever."

  Gleason won't say where his travel plans will take him in 2014, but he did offer a hint: "We have a couple cool ideas we are working on." He also recently added Led Zeppelin — his favorite band, second only to Pearl Jam — to one of his Spotify travel playlists.

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