Former New Orleans Saints special teams standout and current ALS patient Steve Gleason can’t help but wonder whether his football career contributed to his debilitating and ultimately fatal neuromuscular disease.
Yet Gleason still loves the game and has found the NFL and its players to be willing partners in his effort to improve the lives of those with amyotrophic lateral sclerosis, commonly known as Lou Gehrig’s disease.
The Super Bowl is the site of one of the first events held by his foundation, Team Gleason. The 34-year-old Gleason, famous for blocking a punt on the night the Superdome reopened for the first time since Hurricane Katrina, is joining two other ALS patients at the game. They also planned to attend related events, such as the NFL Players Association party over the weekend.
Cleveland Browns linebacker Scott Fujita, a former Saints teammate of Gleason, helped organize the event.
”Many thousands of people who have ALS never had concussions and never played contact sports, so Team Gleason is less about investigating whether football is linked to ALS than it is about helping people who have to live with the disease,” said Fujita, who had an uncle who died from ALS. ”It’s really about promoting technologies that help ALS patients feel valuable, survive and thrive in the process.”
Team Gleason also tries to provide extraordinary experiences for ALS patients while at the same time raising awareness about the disease, which the Super Bowl trip aims to accomplish. Fujita said the foundation also is exploring the logistics of a climbing expedition to the summit of Mount Rainier in Washington, Gleason’s native state, in the fall.
”He’s always been a lifelong adventurer,” Fujita said of Gleason, whose world travels have included stops in the Galapagos and Nepal. ”He looks at it as, `I’ve always lived my life this way, why shouldn’t I try to continue.’ That’s why people are so drawn to Steve and the nationwide response has been so enthusiastic. … People want to be inspired, and that’s why there’s such a strong connection between Steve and so many people.”
Other players such as Jacksonville Jaguars running back Maurice Jones-Drew, as well as celebrities including singer Jessica Simpson and actress Nia Vardalos (”My Big Fat Greek Wedding”), routinely promote Team Gleason on social network sites such as Twitter.
The two ALS patients joining Gleason at Sunday’s Super Bowl will be Dudley Jourdan, 61, from the New Orleans suburb of Covington, La., and David Clifford, 52, of the Indianapolis suburb of Carmel, Ind.
Jourdan, a former firefighter, was diagnosed in late 2009. Clifford, who was diagnosed in 2010, is a former football coach at Carmel High School, where he also played defensive line for the school’s first state championship team in 1978. He is the father of three former or current Carmel football players.
Gleason was diagnosed in January 2011, after which he finished his master’s in business administration at Tulane and chose to keep trying to have a baby with his wife, Michel. He has settled in New Orleans, where Michel grew up and where the couple had their first child – a son named Rivers – in October, only weeks after Gleason went public with his diagnosis.
ALS, for which there currently is no cure, causes gradual paralysis at varying rates. Gleason can still stand and walk with a cane, but often uses a wheelchair and needs help with basic functions such as eating and putting on clothes. Speaking is also getting progressively harder for him.
The New Orleans contingent flew to Indianapolis on Friday on a private plane owned by Austin, Texas, businessman Dick Anderson, a friend of Browns quarterback Colt McCoy. Anderson is an officer of the Busby Foundation, which provides support to families of ALS patients in central Texas.
The Browns and the NFLPA donated the tickets. The NFLPA also donated hotel rooms. The NFL arranged for parking privileges and pre-game sideline passes for the group of 10, which includes caregivers and a couple documentary camera operators. The seats will be in areas of the stadium that conform with the Americans with Disabilities Act.
Fujita, who is expecting his third child any day, initially intended to go but stayed home in California. His close friendship with Gleason has led him to think hard about how football might affect his own health and how long his career should continue.
He plans to play out the final year of his contract next season, his 11th in the NFL, when he’ll be 33, but is not sure beyond that.
”We can no longer deny a link between concussions, head trauma and post-(football) career brain disease,” Fujita said. ”With ALS, there are still a lot of mysteries and there’s a long way to go until we understand that disease, but there’s no denying a possible link there, either.
”As players, we’re always searching for ways to make game safer and to have post-career programs in place to identify symptoms early and treat them,” Fujita added. ”Unfortunately, there’s an inherent danger in the game we play and that’s just the reality of it.”