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Steve Gleason: The Gambit interview 

Gleason on his favorite music, his busy summer and what's next for his ALS foundation

click to enlarge In this Dec. 2012 photo, Steve Gleason demonstrates a recumbent bike given to him by the Ride 2 Recovery Gulf Coast Challenge.

Photo by Alex Woodward

In this Dec. 2012 photo, Steve Gleason demonstrates a recumbent bike given to him by the Ride 2 Recovery Gulf Coast Challenge.

It was seven years ago this month that Steve Gleason achieved immortality among New Orleans Saints fans when he blocked a punt in the team's first game in the Superdome following Hurricane Katrina. But it was two years ago this month that Gleason inspired people far beyond the gridiron when he revealed he is living with amytrophic lateral sclerosis (ALS).

  On the eve of Gleason Gras, his annual event to raise awareness of ALS and support the Gleason Family Trust, and the Saints' season opener, Gleason agreed to an email interview.

  He answered Gambit's questions with the use of assistive technology that allows him to type using his eyes.

GAMBIT: You've been traveling a lot in the last few months. Where have you been, and what have your experiences been like?

STEVE GLEASON: We try to go back to the Northwest in the summers. It gets me out of this heat, and helps us see our Northwest friends and family. We were in Sandpoint, Idaho, which is about 90 minutes from Spokane, Wash., where I grew up. As a kid I spent summers and winters in North Idaho, snowboarding and water skiing.

  We took an ALS patient to Hell's Canyon, where we caught an eight-foot sturgeon and slept under a full moon for two nights. One of our highlights was going to Wrigley Field to watch Pearl Jam. It was a memorable night. A massive thunderstorm came through so it was a two-hour "rain delay," but not one person left and PJ played til 2 a.m.! A few New Orleans friends met us at Wrigley because they won sidestage passes for the show at last year's Gleason Gras ...

  It gets harder and harder for me to travel but we keep figuring out ways to keep rolling!

G: In June, you held the first Team Gleason Summit for the Cure. Tell us what that was, what it accomplished and what you hope it will accomplish in years to come.

SG: During the Super Bowl here in New Orleans, we launched our new campaign, "Putting our heads together to find a cure for ALS." Our hope in doing so was to bring all ALS stakeholders together, look at the roadblocks with new eyes and formulate a plan or strategy to end ALS. The recent Team Gleason Summit was the first step.

  For two days, scientists, clinicians, people living with ALS, their caretakers, advocates and associations came together to try and establish a roadmap for fast-tracking new treatments and a cure for ALS. [The summit was] webcast live to over 2,000 people in 15 countries. Attendees included representatives from Harvard University, Johns Hopkins University, Cedar Sinai Hospital, St. Jude Children's Research Hospital, Emory University, Massachusetts General Hospital and more than 50 other leading organizations.

  Three key areas were identified by the participants as being critical to rewriting the future of the disease in the short term.

  • 1. Establishing a national program to create biomarkers for ALS

  • 2. Collecting and deep-mining data in new ways to identify possible new avenues for treatment development

  • 3. Reducing the cost and time for clinical trials that provide treatments from "bench to bedside."

  These three areas fit into a larger list of 10 priorities that will be further developed over the coming weeks into a collaborative action plan for a cure.

  Currently, Team Gleason is helping people with ALS (pALS). We are providing technology to assist with communication, mobility and more independent living. I believe until there is a medical cure, technology is that cure. But by hosting the Summit, we hope to assure movement toward a medical cure or at least a single treatment for this disease.

G: People are already comparing the 2013 Saints to the 2006 team. Do you see the comparison? And since you got to announce the team's third-round draft pick, what players do you think might stand out this year?

SG: I am not sure the comparison is perfect because I think the overall talent is better on this team. Certainly we have something to prove this year. Let's hope we block a punt Sunday. Then the comparisons will be ridiculous!

  I am hopeful we see some standouts on the defensive front seven and in the offensive running game.

G: You've talked about many of the heroic people with ALS whom you've met. Care to introduce one or two of them to a New Orleans audience and tell a bit of their stories?

SG: Sure. Everyone should know O.J. Brigance. O.J. was a linebacker in the NFL. He was diagnosed with ALS in 2007. Despite the diagnosis, O.J. has continued his passion, and kept his position as the Director of Player Development for the Ravens and serves as a motivator and inspiration for the team. O.J. and his wife Chanda have served as mentors for Michel and I as we navigate our own path.

  Eric Valor (www.friends4eric.org) was a surfer/IT manager before he was diagnosed with ALS almost a decade ago. More than any pALS, Eric has helped me deal with the disease. Eric is like Neo from The Matrix. Although he can't move and uses a ventilator to breathe, when he "plugs in" he is more able than anyone on the Internet. He serves as Team Gleason's (TG) technology advisor. So, he leads our Web X meetings; he moderated the TG Summit online forums and livestreaming this summer. He texts, tweets and calls anyone and everyone with his eyes. He offers pALS remote tech support by using screen sharing. Eric and I have a chat set up nearly every night.

  The only thing that sucks about Eric is: He is a 49ers fan.

  Steve Saling was a landscape architect before his diagnosis in 2007. He inspired the first fully automated ALS residence in the world located in Boston. It turned out we had similar outlooks on how patients can live purposefully, productively with the right technology and support.

  Steve told me about the ALS nursing home he lived in. The residence actually allowed ALS patients to control their environment. Computers, TVs, lights, doors, elevators and more can be controlled by using just their eyes. This innovative concept allows patients to live very independently without bankrupting their families. His motto, "Until medicine proves otherwise, Technology is the cure" resonated with me. (Check out the voicemail he got from Stephen Hawking: www.alsri.com.)

  These are incredible examples of pALS who have helped me and Michel forge our own way. More importantly, these are examples of incredible humans I am proud to call friends. But I would be remiss if I didn't say all the pALS who reach out to us, who are committed to finding solutions to this disease, who choose life and its adventures — local and worldwide — are creating a powerful voice and inspire me daily.

G: You've talked about how important music is to your life. What artist has moved you the most, and why? And are there any New Orleans artists you think are particularly special?

SG: My first favorite bands were Led Zeppelin and Simon and Garfunkel. One of my friends' parents had a record collection that we found in the basement. I remember hearing Kashmir by Led Zeppelin and feeling like I blew my mind on what music should sound like.

  I grew up just a few hours from Seattle, so the grunge scene from the '90s was influential on me. Alice in Chains, Nirvana, Soundgarden and Pearl Jam. During my football career, I became friends with Mike McCready (guitarist for PJ). I have since gotten to know the rest of the band fairly well. I interviewed the band for their upcoming album, Lightning Bolt, which is their tenth. The interview will be utilized around the release of the album Oct. 15.

  Several local artists I love... I do not want to forget anyone... Theresa Andersson and John Boutte played our wedding ceremony. My Name is John Michael. Revivalists. Anders [Osborne]. A favorite music memory of mine is watching Galactic play "When the Levee Breaks" in 2006 at Jazz Fest. Big Sam. Trombone Shorty. Mia Borders. Rotary Downs. Kristin Diable. Coyotes. But the most special — Paul Varisco & the Milestones.

G: You make a lot of great Spotify playlists. Which is your go-to? Pearl Jam will perform at this year's Voodoo Fest. Any requests?

SG: My only real Spotify playlist is Testdrive. I "test drive" two new records every couple weeks. No comment on Voodoo. It should be fun though!

G: We're more than halfway through 2013 — what's your pick for album of the year?

SG: Wow. I have no idea! Well, I mean, Pearl Jam's new album, Lightning Bolt, comes out in October. I was lucky enough to hear it several times this summer for an interview with the band. That has got to be at the top of my list.

  Other candidates are:

  Bankrupt! by Phoenix

  Wrote a Song For Everyone by John Fogerty

  Civil Wars by Civil Wars

G: You were looking forward to the Dalai Lama's visit to New Orleans. Were you able to see or hear him? What thoughts did you have on his address?

SG: Yes. I watched him speak [at the University of New Orleans]. At least from what I have read from him over the years, the Dalai Lama would probably be my first choice for the question, "Of any living person, who would you most want to have dinner with?"

  He did have some points that stuck with me. When someone asked, "How do you stay optimistic amidst so much tragedy?" His basic response was, "What other choice do I have? It's more fun being happy, no matter what the circumstances." That was something I could relate to.

G: After riding in Bacchus during this year's Carnival, will you join another krewe next year? Do you have a favorite?

SG: Who knows?! I have ridden in Endymion and Bacchus two times, so those are my favorite rides, but my favorite parade to watch is Thoth. We compete to win the Mardi Gras trophy every year during Thoth. We have won 16 out of 17 years, so I suppose it's not really a competition. "We're number one!'"

G: Your high school alma mater retired your jersey recently. What was it like to be back to receive the honor?

SG: Most of why I am the guy I am today is because of my relationships I formed and the community from Gonzaga Prep. Enough said.

— For more information on Team Gleason and fighting ALS, visit www.teamgleason.org.

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