Courtesy of Microsoft

Four years after his diagnosis, Steve Gleason is working to assemble an ALS research project bigger than any that's ever been done before. And if the reaction of a small crowd in a Manhattan hotel is any indication, he could become a movie star along the way

By Emily Kaplan
October 09, 2014

NEW YORK — The cocktail room in the lobby of Manhattan’s NYLO Hotel fell quiet; the only sound was a woman rifling through her purse for more tissues. Grown men struggled to quell lumps in their throats.

About 100 people waited for the man who has no voice to speak.

“Can you hear me OK?” asked Steve Gleason, his words chosen with the eye-tracking software on his computer, his voice projected through speakers attached to his wheelchair.

His words emanated, loud and clear.

It has been nearly four years since the former Saints defensive back and special teams ace was diagnosed with ALS, and last Tuesday at the NYLO he showed a trailer for a potential feature-length documentary. Gleason began the project as a video diary shortly after his diagnosis, a way for him to show his then-unborn son how much he was loved, is loved, will always be loved. The images—Gleason in the delivery room, baby Rivers hitching a ride on dad’s wheelchair, Steve cradling toddler Rivers atop Peru’s Machu Picchu, Gleason breaking down in a webcam confession—are heart-wrenching. Listening to Gleason speak, in front of this small crowd of potential film backers, is revealing.

“Why would I want to expose myself and my family, in some intimate situations, to the world?” he asked rhetorically. “It was, and still is my belief that a cure for ALS will be found only when the general public has a clear and intimate understanding of ALS and its effects.”

The man who speaks through a computer, the patient who was once told he only had two to five years to live, the former professional football player whose body and mind no longer work in concert, is fighting like hell to see his son grow up.

And so, publicly, Gleason has championed awareness for the disease—even as the Ice Bucket Challenge came and went, and even as outside interest in finding a cure waxed and waned.

Behind the scenes, Gleason has fought even more aggressively. Over the past year and a half, the 37-year-old has teamed up with leading neuroscientists, researchers, academics and pharmaceutical companies to help develop one of the most ambitious initiatives in the history of ALS research. It’s called the Individualized ALS Treatment Initiative, and it is the single largest collaborative research project ever proposed on the ALS front.

Steve Gleason, the man who speaks through a computer, the patient who was once told he only had two to five years to live, the former professional football player whose body and mind no longer work in concert, is fighting like hell to see his son grow up, and perhaps, just as importantly, to extend the lives of future ALS patients.

“I believe with the right amount of funding and with the right people, most things are possible,” Gleason told The MMQB. “Yes, I believe there can be a treatment or cure in my lifetime.”

[Editor's note: The following video of Gleason's trip to Machu Picchu is not the documentary trailer, though some of this footage was included in it.]

[vimeo 64781849 w=800 h=450]


The IATI began with a summit Gleason hosted in June 2013. “We said, ‘What could we do on a larger scale that could really make a difference?’ ” says Jeffrey Rothstein, Director of John Hopkins’ Packard Center for ALS Research. “We came up with a plan that was just not doable by any normal organization because of the scale of it and the ultimate goals. But if we teamed up all these leaders in industry, we could do it. So we brought it to Team Gleason and said, ‘Here’s what you wanted. Go find the funding.’”

They did, and are engaged in ongoing discussions with groups to secure the initial finances (the price tag is well over $500 million; Gleason traveled the country to solicit mostly private contributors).

Nearly 90% of ALS cases are sporadic, meaning it can happen to anyone without warning. A small percentage of patients inherit ALS from family. Some factors—such as a prevalence among athletes, especially football players—have raised questions about links to certain populations, but to date there is no research to confirm a correlation.

For ALS researchers, it is imperative to identify those genes. Genes tell us the starting point of the disease. “If we can find the gene, understand the gene, we can find a drug and bring it back to the patient,” Rothstein says. That’s the IATAI’s foundation.

Once the funding is in place, ALS patients, including Gleason, will donate tissue or blood samples for the iPS trail (stem cells). They hope to collect thousands. For context, currently the largest selection of iPS for the use of ALS studies is at Johns Hopkins, around 140 cell lines.

With a large enough population of iPS cells, the researchers can determine patterns in ALS. This could help researchers subdivide patients, as they do with different types of cancers, and potentially find more successful drugs.

The study could have such a quick turnaround that researchers will be able to go back to those same patients for clinical trials.

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This will be an enormous amount of data, both expensive and exhaustive to crunch. “But I really think there’s a good chance this data will lead to something,” Rothstein says. “Very feasible.”

That something isn’t necessarily a cure. A more realistic goal for now, Rothstein said, is slowing the disease. Currently, Riluzole is the only FDA-approved drug on the market. “Riluzole slows the disease, but ever so slightly that you don’t even notice it,” Rothstein says. “So we are looking for a far better drug. It’s like looking for a home run rather than a bunt.”

The best-case scenario, of course, is finding a cure. “But curing someone is a completely different biology that is probably out of the hands of science today,” Rothstein says. “It’s not possible to regenerate cells in our nervous system. Not possible. Somewhere in our future, real stem cell therapy, that can happen.”

Gleason understands that. But one of his favorite quotes comes from Muhammad Ali, and it echoes a philosophy Gleason has subscribed to over the past four years. “Impossible is just a big word, thrown around by small men, who find it easier to live in the world they've been given than to explore the power they have to change it. Impossible is not a fact. It's an opinion. Impossible is not a declaration. It's a dare.”

“I am daring those capable individuals to change the world we live in,” Gleason said. “I’m daring the world to step up and help solve ALS."

Gleason’s dare is loud and clear. He just needs the world to keep listening.


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