I have to admit, I was largely ignoring the Superbowl hype before last week. Don't get me wrong...I was ecstatic for my city to be hosting the Superbowl and I loved the attention we were getting, I was just largely avoiding downtown and all of it's chaos. That is until I got a media pass at the convention center. A few athletes and "celebrities" later (Jerry Rice, Emmit Smith, Leon Sandcastle, Steve Young, Desmond Howard, Scott Fujita, Drew Brees, Robert Griffin III, Troy from Swamp People, Mitch the Mayor...among others, and yes, I'm absolutely name dropping) and I was hooked on the chaos that was Superbowl week. It was insane, but I'll let the pictures do that talking.
Team Gleason, the reason I was there in the first place, had an emotional press conference to announce Steve's campaign to the world that he was going to find a cure for ALS. ALS research and funding is still largely ignored and almost non-existent. We don't have a cure. We still don't even know what causes it. Hell, we can hardly even slow it down. But Team Gleason is setting out to solve all those problems. ALS is going to be the new breast cancer. It's going to be everywhere. Think "ALS" month, with every player in the NFL wearing #37. It's going to be huge. You can single handedly thank Steve Gleason and his team of dedicated friends for that. He ain't going down quietly, thank God.
Besides just funding the search for a cure, he's super involved with other pALS (People with ALS). As of right now, the only "cure" for ALS is the technology, like the kind he uses to talk in his synthetic voice. Using nothing but his eyes to type out sentences on a screen in front of him, he can talk in his own voice. He recorded hundreds of hours worth of material that this technology pulls from. It's pretty amazing to see and hear it in action. In his own words, "typing with your fingers is soooo 2012." He is all about giving this technology, along with things like his super wheelchair, to patients who don't have the means to afford it. He is also building a facility to house pALS right here in New Orleans. Think a nursing home (but much cooler) specially designed and built from the ground up for pALS. It's one of two in the entire world. It's his dream for there to be one in every city.
Without a doubt the best part about Steve and his fight is his sense of humor. During the press conference a reporter asked him what the most humbling part of the whole thing was. He immediately began to type with his eyes and responded with his synthetic voice a few moments later. "What is most humbling? It's having to have someone else wash my balls for me." Keep in mind this press conference up until this point was extremely emotional. There was not a dry eye in the house. There was media from all over the world. The mayor was sitting next to him. Everyone in the room exploded in laughter. This is Steve. He's great, and he truly inspires those around him. (For the record, the word "inspired" is greatly overused these days...)
Without a doubt the best part about Steve and his fight is his sense of humor. During the press conference a reporter asked him what the most humbling part of the whole thing was. He immediately began to type with his eyes and responded with his synthetic voice a few moments later. "What is most humbling? It's having to have someone else wash my balls for me." Keep in mind this press conference up until this point was extremely emotional. There was not a dry eye in the house. There was media from all over the world. The mayor was sitting next to him. Everyone in the room exploded in laughter. This is Steve. He's great, and he truly inspires those around him. (For the record, the word "inspired" is greatly overused these days...)
Steve's attitude never ceases to amaze me. He could easily be forgiven for fading away quietly. After all, "a terminal disease can really mess with your head. Honestly, it makes you want to run away to the moon," he said in the press conference. But he's not. He's fighting this thing head on. He is the voice of thousands of pALS who never had a voice. He and Michel and Paul and everyone involved are truly awesome people. (The word "awesome" is also way overused.) Anyway, I'm proud to have documented this stuff. If you feel so inclined to help out his cause, please head on over to his website to see how you can help. Check it out here.
Watch this recently filmed PSA:
Chase was good enough to donate $350,000 to Team Gleason and has been instrumental in developing the technology that Steve uses. A great partnership. Drew Brees donated another $250,000, personally.
Scott Fujita is one of Steve's closest friends and has stuck by his side for the entire journey. He couldn't have been a nicer guy. Not only did he donate all his time to Team Gleason while he was in town, but he gladly stopped and talked to anyone who came up to him. On media day he must have done 30 interviews, half of which were not scheduled. He's one really cool dude.
Chris Reis (of the Superbowl onside kick fame), Jay Glazer, & Scott Fujita.
The great Emmitt Smith.
Rivers, as usual, stole the show.
Honestly, I love our Mayor. A really great guy that truly cares about the city and donating his time to causes like Team Gleason.
Right after the balls comment.
Trombone Shorty checking out the new technology.
Lance Moore! We really are lucky to have such genuinely nice guys play for our city.
Dick Vermeil and Scott Fujita talk it out.
Dude played 9 games and now his mug is plastered 6 stories high.
NFL great La'Roi Glover.
Victor Cruz graciously donated his time.
...he did not do the salsa dance.
Scott Fujita joins the party.
Still cracking jokes.
Robert Fogarty of Dear World.
Matt Schaub and his wife share a message.
"Hate Sucks." I agree.
I don't know about you, but I'm not leaving the top down on my 458 Spyder. I can just see some drunk Yat pissing or throwing a half empty Daiquiri in there. It's only $257,000.
Hippie vs. Jesus Freak.
The almighty RED.
Doreen the Clarinet Queen. If you've ever heard her play then you know.
I'll let Grandpa Elliot close it out. Time to go watch the game...
this was an awesome write up dude....Very impressed with the photography.
ReplyDeletethanks Townsend...been following your stuff as well, it's awesome my man...I'm jealous of your worldly travels!
DeleteYou told the story well and the pictures are
ReplyDeleteGREAT! Thanks for the time and effort.
No White Flags!!! Let's Put our Heads Together to Find a Cure for ALS.
Thanks Anon! Let's keep up the good fight!
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