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Chris Nowinski

A Harvard football player turned professional wrestler, Nowinski’s experience following a debilitating concussion led him to found the Sports Legacy Institute, a nonprofit dedicated to research and education around head injuries. He spoke to FRONTLINE’s Michael Kirk on June 12, 2013.

A Harvard football player turned professional wrestler, Nowinski’s experience following a debilitating concussion led him to found the Sports Legacy Institute, a nonprofit dedicated to research and education around head injuries. He spoke to FRONTLINE’s Michael Kirk on June 12, 2013.

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    What happens with a brain that comes to Boston. What's happening with the brain when it arrives? Where's it going? What's going to happen when it gets there?

    ... When a brain comes to Boston, it heads to Dr. Ann McKee's laboratory at the Bedford VA Medical Center, which is affiliated with Boston University School of Medicine, where she's going to run a series of tests on it, looking for any abnormalities in the presence of disease, just like she has been for decades now. ...

    How complicated is it to get the brain there? What state does it have to be in? How soon after death?

    Getting brains for study post-mortem is complicated, but it's been happening long enough in science that it's not anything new. The hardest part is simply reaching out to the family and getting them to agree. Starting in 2006, I started making those calls, and luckily enough people have agreed to it that it now seems normal to people to donate their brain to science, or donate a loved one's brain to science, looking at the long-term effects of trauma.

    In terms of how it arrives, there's two different ways. One is called fixed, when it's been fixed in a formalin solution so that it is preserved and can be easily shipped and studied. That can happen anytime after the death, as long as it gets put in formalin within a few days. And then it fixes for a few days, and then it might show up a few weeks later.

    The other way it arrives is fresh. That means that we have to get the brain usually within hours of the death, where it is not fixed before it comes by courier, and immediately frozen so it can be studied in more ways, including the genetics and other inflammatory markers and special tests that Dr. McKee knows best.

    It's an interesting experience. These guys, when they shot it yesterday, said it felt almost like a kind of holy thing, like a really special, almost religious in some way to have that brain handled. Is that about right?

    You know, I believe so. When you have the responsibility of actually possessing somebody's brain, which is probably the best representation of who they were, you really treat it with the utmost respect, because you have a piece of them. And you have probably the most important remaining representation of who they were. ...

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    Let's do your back story. What's your life story? What brings you all the way to being in this chair right now about this issue?

    The thing that most brings me into this chair right now is a lifetime of fearless participation in sports. I was a jock growing up, played everything. Started playing soccer in the first grade. Started playing football in high school. Played defensive tackle for Harvard. And then decided to join WWE.

    For people who don't know, what's WWE?

    Well, WWE is a professional -- it's even hard to describe it these days, because we don't use "World Wrestling Entertainment" so much. We don't use "wrestler" anymore. But I got involved in professional wrestling, eventually with WWE, World Wrestling Entertainment, where I traveled the world getting to play a character and fighting folks.

    Who was the character?

    Well, I came in in the one year that we used our real names, so technically I was Christopher Nowinski. Coming off of a reality show I was on called Tough Enough, I was known as Chris Harvard. I got to play a snobby, arrogant, Ivy League type. I basically was inspired by certain people I didn't necessarily like going to college with who thought of themselves differently than the rest of us.

    It was a ton of fun. I got to just travel the world insulting people, and really challenged myself physically and mentally for this performance that was a ton of fun and taught me a lot about -- I mean, the things you learn in the ring are quite amazing in terms of psychology, in terms of how to speak, in terms of how to understand what people want to see. ...

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    Let's back up to your sports, really football, high school, college football. Tell me about it, Chris. ...

    Growing up in my town, very few people played youth football. Friends started playing in seventh and eighth grade for the Cowboys, and I asked my mother both years if I could play, and she told me no, because she was worried about knee injuries. I finally convinced her to let me play in high school.

    I didn't know where I really belonged out there, because I was 6'3", 160 pounds, really skinny, skinny reed. But I kind of latched onto it very quickly once we got the pads on. I was named captain of the defense on the second day. I played both ways my entire career, beginning at middle linebacker including on the varsity as a sophomore and an offensive tackle the rest of the time, in every special team, and captain of the team as a senior.

    I mean, in high school, I loved the game. I loved the physicality. I was usually the best player on the field, so it was really just fun for me. I loved to hit people. I loved the physical challenge of it. I loved the idea -- I loved just getting dirty, getting knocked down and getting back up, just fighting the good fight.

    And I loved the camaraderie. I loved the idea of having that many guys working together. I loved the lessons it taught. I mean, it was a lot of fun for me.

    I never worried about injuries. I certainly never had any concept of concussion. You know, I remember vividly my junior year I was captain of the defense, I broke my hand early in the game and kept playing with it.

    And at one point, the second half, it was so swollen and painful that I was kind of hiding it behind my back and just playing one-handed, but still very effectively. I remember during a timeout, because I never came to the sideline during a timeout, I got 10 feet from the coach. I mentioned, "Hey, I think I broke my hand," and he nodded to me and then just kept giving me the play.

    So I kind of knew what the rules were: You play through those things. The next week I had to have surgery. I played the next game with two pins in my hand and a bubble cast around it. It was just what you did. And that was the lessons I learned about injuries.

    Did you get your bell rung?

    You know, I don't remember any bell rings in high school. I don't remember high school very well. I know I knocked kids out. I remember a few kids getting pulled off on ambulances, but I don't remember getting dinged myself. But again, my memory is not what it necessarily should be.

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    So college, similar experience, all the things you talked about?

    Yeah, college was still great. It was a bit of a rude awakening, because you don't realize how much the talent improves. So to go from being the star to being the freshman body that gets beat up by the varsity guys was tough. But no, it was the same situation. The greatest guys in the world, still my closest friends. You know, great program at Harvard. They treated it just like every other D1 [Division I] program. Football was a sacred thing. You gave it your best, and you also did the same with your academics. Luckily, we didn't have to make sacrifices there.

    The only thing is, it was just a little more serious. You'd put more time into it.

    Did you ever get hurt in college?

    Yeah. There were a couple of stress fractures. The only game I ever missed, my junior year I got hyperextension on my elbow, bent it backward. Again played through the half with one arm until they forced me to stop because I literally couldn't lift my arm up at all. And they were like, "Well, you're going to get hurt if you keep playing like this." All right, fine, so I missed one game for that, then wore a cast from here to here the next game that locked my arm this far. I made two sacks in that game.

    Playing through injury was kind of like your identity. My senior year I was coming off of a broken wrist from the spring game. They put me in a cast the whole summer. I couldn't bend my wrist backward. It was a high ankle sprain in the third game. It made it so I couldn't practice the rest of the year, and I had to walk on crutches much of the week, but played every game. You know, found ways to make the pain a little lower during the game.

    That's the ethos, right? That's the whole idea.

    Yeah, you play through. It's a contest to see what kind of injuries you can play through in a lot of ways. You know, the only thing guys didn't mess with was their neck, but everything else was fair game. ...

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    So as Chris Harvard, how many times did you land on your head?

    Chris Harvard landed on his head quite a bit. You know, as much as wrestling is performance, there's a very, very small margin of error. And especially when you're learning the thing, you fall on your head a lot. And especially when you're young and you don't realize what the limits of what rational things you should do in the ring are, you have people do things to you that are pretty stupid.

    I love going back and watching film of me letting guys put garbage cans over my head and watching one just completely -- like, a real garbage can completely fold in half just on my forehead. And [I] think, God, that was not too smart. But at the time it gave me credibility, and it didn't seem to hurt too much. So I just -- I put myself in some bad situations.

  6. Ψ ShareThe injury that ended his pro wresting career

    So when did you start seeing Dr. [Robert] Cantu? When did you know you had trouble?

    The injury that ended it all was June 2003. I just got a kick to the head. It wasn't expected, meaning that I knew a kick was coming, but I didn't expect it to be so close, and I really wasn't ready for it. And it caused me to black out. It caused me to be completely confused. I forgot where we were and what we were doing out there. Massive headache immediately. But of course we didn't stop the match. We finished the match. And then the mistake I made was that I lied about it; I lied about how bad I felt every day for five weeks.

    At one point, a couple of weeks in, I was doing so bad I did take some time off. I saw a doctor. I didn't bounce back within a week, so I started lying because I got bored with sitting at home. I went back, kept getting hit and kept getting worse.

    You know, the night that I finally decided to stop, it was that morning I had been acting so strangely that my on-TV manager tried to get me to stop. I ignored him. And then when I was driving to the show in Terre Haute, Ind., with the security guard, I guess I kept falling asleep, and I wasn't holding the conversation. He called ahead and told them, don't let me wrestle. So I didn't wrestle that Sunday.

    Then that night I had my first incidence of sleepwalking, and went to sleep and woke up on the floor of the hotel room surrounded by a broken nightstand and lamp, and my girlfriend screaming in the corner because she told me she'd woken up to me standing on the bed, sweating profusely, trying to climb the wall. Eventually I jumped headfirst into the wall and went through the nightstand. And I couldn't believe it because I didn't remember anything. I wasn't awake.

    I was scared to go back to sleep because I didn't know where I would end up, so I stayed up the rest of the night. It was 1:00 in the morning, and showed up the next day and was honest, and I said, "There's something really wrong with me." And the headache didn't go away for five years. ... For the first 12 months I knew if I'd gotten better, I would have jumped right back in the ring. But after 12 months I said, "I can't live like this."

    Did you say five years?

    Five years I had headaches. Three and a half years of sleepwalking. Every night I would chase shadows; I would attack things. I had to be heavily sedated each time, every night, so that at least when I had these sleep activities I wouldn't get out of bed as frequently; I wouldn't run around the apartment like I had before, I'd try to break windows. But I still today wake up constantly and think I'm choking to death.

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    Does that explain in some way, Chris, why this has become such a crusade for you?

    Yeah. I mean, there's no question it was my personal experience.

    What do you mean?

    Well, as far as we've come in the last six years, for me -- this has now been 10 years since I was injured -- it was really hard work and a long shot in the beginning to ever move the needle on this issue. What motivated me every day was the fact was my head was killing me. I knew that I felt awful, and I knew that I wasn't the only person. But I was a person in a position to make a difference.

    And that a lot of people were quietly suffering out of ignorance, out of other people not wanting to take this issue seriously because it might affect them financially. And I thought that I needed to act on their behalf because we were all quietly suffering. We didn't need to quietly suffer anymore.

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    ... The next event, if I could talk about, is the Tom McHale story. Tell me about Tom. Tell me about how his brain gets to you. Tell me who he was, and what happened to him.

    Tom was a former Cornell football player and a nine-year NFL veteran on the offensive line, and he was retired. He was running restaurants at that point, in his mid-40s. Had three young boys. He was married to Lisa.

    At some point in his early 40s, he was having pain issues and started taking pills for it to cover the pain, so eventually that led to him experimenting with other drugs. He developed an addiction problem and could not defeat it no matter how many times he went to rehab or how many interventions were held by the family. Eventually he died of what they call polypharmacy, of mixing too many drugs.

    When we heard about the story -- and this was back when we were -- I guess I've been doing it ever since; when you read about a former athlete passing away, we reach out to the family. I believe we tracked down his father-in-law. Maybe that's who called back. And we inquired about the brain.

  9. Ψ ShareOn asking for a brain from a grieving family

    ... How hard is that? What does it feel like? Who do you call? What's the response like when you call? What do you say to somebody?

    One of the hardest parts about this is having to call grieving families within hours or days of losing a loved one and ask for the brain. At the beginning it was -- you know, it was unprecedented. It was not done. And I kind of made a decision early on that this was the only way we were going to get answers quickly. As painful as it was for the families, as painful as it was for the people calling, it was just something we had to suck it up and do, because the worst thing that could happen, they say no. The worst thing that could happen is they're upset, but it's temporary, and it's nothing compared to what they're feeling losing somebody.

    At the beginning, when I first kind of got up the nerve to do it, I wrote down a script, and I prepared, and I practiced. I used to literally take 45 minutes or an hour just mentally preparing myself for wandering into someone's life like this and asking them for something that's very precious and very -- you know, not a normal thing to ask, that they get calls about.

    At the beginning it was very different than it is now, because now when we call people, most of them actually know of the work. Many of them are expecting our call. Some of them said they've been waiting by the phone; they've been hoping to hear from us, because they want answers, because they have watched the person they care about just change in front of their eyes into someone worse, into someone different and to somebody struggling. They watched sometimes these people tear apart the family because they can no longer control themselves. So they want answers. Back then people didn't know there were answers.

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    So when you called the McHales, did you try Lisa first and then --

    No, I don't believe I tried Lisa --

    It doesn't matter.

    I don't believe I tried Lisa first, because calling the widow is -- I avoid that when I can. I try to get to somebody who's related but not directly -- not a wife, not a son, not a parent. Try to get a friend, try to get something like -- you know, somebody to act as a buffer. So if they don't want to do it, it's not -- they don't have to deal with me.

    So you get the father-in-law.

    ... I think part of the reason we called -- because back then we weren't calling everybody; it was still so new -- was because the father-in-law was a doctor, so we figured he might be open to this discussion.

    He called us back, and he said, "We'd love to. We also got a call from Bennet Omalu, and we agreed to do a study with him, but we think having two groups study it would be what Tom would want because you could learn more." So we said, "We'll do it with you, too."

    So Ann [McKee] gets Tom's brain. She doesn't know who Tom is or what it is, and she sees something. What does she say to you? Do you remember what happens then that you hear that it's CTE [chronic traumatic encephalopathy] and that it's -- I guess you must have guessed by his behavior pattern that it looked a little bit like [Andre] Waters' and a little bit like [what] Mike Webster was, I guess.

    Well, I don't remember what we expected. I mean, Tom was a little different in the sense that Lisa was convinced he'd never had a concussion before. And back then we didn't assume everybody who had a bad outcome had CTE. But we figured there was a chance, because he was a lineman for so many years, and because he did change, because usually successful Ivy League family men don't become drug addicts overnight. So there was a question worth looking into.

    So I wasn't necessarily surprised either way. I think the most surprising thing was just the extensiveness of the damage. I mean, the images of his brain were shocking. And it was Ann's technique; she was able to make images no one else can, showing just the extent of the disease. And for him being 45 and in the prime of his life, you know, still high-functioning in some ways, besides the drug problem, to have just the density for the damage and the dark spots was scary.

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    What happens next? So Ann knows that it's CTE. You know that it's CTE. What do you decide to do with that information, with that knowledge? I mean, Omalu writes papers for Neurosurgery on Webster and Long. But you guys, you're not going to necessarily only write papers for medical journals. You're into public information, right?

    You know, back then we were operating on the fact that people needed to know this information today; that there were athletes playing sports recklessly, not recognizing the consequences of their action, that could be reporting concussions. There were people out there committing suicide because they didn't have a name for their problem, and they didn't know that they could seek help.

    Starting with Andre Waters, the idea was when we know, we tell people, because they need to know. And this is going to save lives. And this is such a simple diagnosis. It's not a question of whether or not they have CTE, so we aren't losing a lot scientifically.

    It was something I had to convince Dr. McKee to do. She wasn't used to that. She knew the risks that would come with scientific credibility, to publish through the media. But you know, it was that understanding that we had to make some sacrifices, because we were trying to change the world.

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    The first, most obvious way that I read about and that I know about I think is the Super Bowl in 2009, where you guys hold a press conference and talk about it. What was the idea behind that? How did that occur? Why Tampa Bay? Why the Super Bowl? ...

    We decided to do a press conference at the Super Bowl in 2009 because we were in the midst of a battle with the NFL about this issue. The NFL at that point was saying that CTE is not a real -- this is a misdiagnosis; this is not a real problem; it's not connected to trauma.

    It wasn't right, and that message was going to get people hurt.

    What did you say?

    I said that message was getting people hurt. Even I grew up trusting everything the NFL said. They have an incredible brand, a trustworthy brand in the sense that if they tell you there's not a problem with this, as a football guy, I should believe that, right?

    So because that was the message that they were sharing, that Waters wasn't the real thing, that [Justin] Strzelczyk wasn't the real thing, that Webster wasn't the real thing, it became time to find other ways to move the needle on this, to get public awareness, because people deserve to know.

    And when you're running an organization without much funding, you often have to go to where the media is, and the media's at the Super Bowl. They have more reporters at the Super Bowl than anywhere in the world, and reporters that we assume should care about this issue because it is a part of the game that they're covering. So we said: "Let's go to them. They're not coming to us. Let's go to them."

    So we set up a press conference across the street from the media center and tried to pull the media over to say: "Look, this is real, and you guys need to see this for yourself. You guys need to talk to the doctors so you as reporters understand this, so you can go tell the world, 'Hey, we need to take this issue more seriously.'" ...

    You know, it was disappointing in a way, because there were thousands of reporters across the street, and probably two dozen were willing to walk across and learn about CTE. Luckily, it was some of the big boys. It was The New York Times; it was CNN; it was ESPN. They were all willing -- they covered it.

    ... Are you disappointed by what happens in Tampa? Is it just one blip on a long trajectory that you know you're underway and away you go?

    I think by 2009 I realized that this was going to be a long process, that you were going to have to keep just pounding against that wall, and eventually it would crumble. But it wasn't going to happen overnight. And there weren't that many people in power positions who wanted to see us succeed. While we had great advocates in the media, it was a minority of people. I did recognize that for most football writers to cover this was a risk to their own career. ... That's why it took a baseball writer, Alan Schwarz, to break it down, because access was not his concern.

    And the implications of not covering this story?

    The implications of not covering the story is that it took dramatically longer than it should have, that the concussion issue was covered up, kept from the American people for -- I mean, let's be honest -- decades longer than it should have been. I mean, it had been churning more in the '90s and the 2000s, but we've known about this for far longer than that. ...

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    Others on this topic:
    A League In Denial?

    One of the great things we talked to Ann about that's just a great story is, she goes to the MTBI [Mild Traumatic Brain Injury] Committee. ... What's your version of what happened? Were you there? Were you invited?

    I was there. I wasn't invited.

    That's even better. So take me to the meeting. Take me to what happens, and what your and Ann's aspirations were and what your experience actually was.

    At some point after the 2009 Super Bowl press conference, the MTBI Committee of the NFL reached out to Dr. McKee and invited her down to present to them. She was being given the opportunity to show the science, and we knew going in that they were doubting it.

    She wanted me to join her because I think she thought it would keep them honest, and she wanted a kind of witness to what happened, because she had no idea I think how they were going to treat her. I think she hoped it would be a great scientific meeting. ...

    So she said, "I'm happy to accept this, but I want to invite -- Chris is going to join me as a collaborator." And they said no. They said, "No, Chris isn't invited." So she said, "OK, well, then I'm not coming," and then they said, "We'd love to have Chris." [Laughs.]So I came and sat with her, and they had a couple of other experts come in, in neuropathology and tau. And she presented her work.

    Take me in the room. Where do you go? What's it like? Is it in the NFL building?

    Oh, yeah. So we're at the NFL headquarters on Park Avenue. We get our pictures taken for security, and we head on up to a very, very fancy conference room, nice wood paneling, jerseys and trophies in the glass. It was probably 15 members of the committee. There were two of their defense attorneys, and there were a couple outside experts.

    We were surprised by the attorneys. But I don't know. The attorneys were very busy taking notes.

    What were they doing there, do you think?

    I think the attorneys were there to figure out what the researchers had and what to be prepared for down the road. They were clearly thinking about it already. ...

    So Dr. McKee presented; Dr. Dan Perl, [then-director of neuropathology at the Mount Sinai School of Medicine and a consultant to BU's Alzheimer's Center], presented; Dr. John Mann from Columbia, [a neuroscientist and psychiatrist who specialized in suicide research]; Peter Davies, [an international leader on Alzheimer's research]. And there were questions about CTE, if it fits.

    The interesting thing about the committee was, you know, the committee had gaps in knowledge. They had different types of experts. What they did not have in that room on the committee were neurodegenerative disease experts who really should understand CTE. I mean, there was traumatic brain injury people. And that was one of the big shifts that happened here, is that we went from talking about this as a traumatic brain injury problem to a degenerative disease problem, and it required a whole different way of thinking and a whole different group of experts.

    I remember at one point one of the NFL doctors asking: "Couldn't you be misdiagnosing this? These all look like they could be frontal lobe dementia." And Ann said: "Well, I was on the NIH [National Institutes of Health] committee that defined how you diagnose that disease. So no, they're definitely different diseases." She had the experience, and they didn't.

    Did you sense a sort of condescension from them, from the doctors? She certainly does.

    As a white male it's hard for me to always pick those things up. I mean, the questions were certainly not posed in a -- always in a respectful manner, I'll say it that way. That's sometimes just how scientific meetings go. Whether it was -- I'll let Ann discuss the sexism part. ...

    The results of the meeting? Any tangible, other than "Thank you and goodbye"?

    No. I think afterward there was a little bit more of a respectful tone through the media. I actually do think that they started believing what they were seeing, started believing Ann. Ann is a great presenter, and she's incredibly credible. And I think there was actually a shift in the room going from "This is all stupid" to "You know, maybe there's something to this." I mean, there wasn't any real follow-up or anything, but I do think there was a --

    And also there was the concern, again, are we being used so they can say we brought them in and what they have is terrible? But it wasn't done that way. ...

  14. Ψ ShareHow NFL wives brought this story to the forefront

    Talk about the women. Talk about the wives.

    Any good scientific story needs a public face, and it needs a story that people can understand and care about. What was so important was that the wives of players suffering, players who were diagnosed with CTE, were willing to step forward and tell those stories and explain just how devastating this disease had been to their family, to the individuals who died of CTE, or with CTE.

    You know, Eleanor Perfetto did an amazing job just staying on top of the NFL. I remember back in the beginning that Dr. Perfetto received a letter on behalf of [her husband] Ralph Wenzel, inviting him to a meeting to talk about this issue. And of course Ralph was in care and could not attend or speak for himself, so she showed up and said, "All right, I'm here on behalf of Ralph because he's got dementia, and he can't be here," and wasn't allowed in the meeting. And I was like, ooh, that was a bad idea. (Laughs.) They should have let her in, because she made that a big deal.

    Dr. Perfetto and others really put a face on the injustice that was happening here, that this wasn't about who was going to play in the game on Sunday. This was about, are kids' fathers going to be there to raise them? And what would change the terms of the discussion that allowed people to get this was not about sports; this was about people's lives.

    And the NFL, how did they react? That's a hard one. How did they react to the wives of former players agitating on behalf of this issue?

    Well, one of the things that they did that was very important was Sylvia Mackey advocating on behalf of John [Mackey], who had dementia and eventually was diagnosed with CTE. She got the NFL to start paying for dementia care for the former players, the 88 Plan. ... It was good for the wives in the sense that dementia was no longer going to bankrupt them like it had been.

    But it also took the edge away from these very angry wives willing to go public with "Hey, our husbands have dementia. They are legends of the game, and it may have been caused by playing." ...

  15. Ψ Share

    So let's go to Congress. They decide to hold hearings. ... What's the hope? What's the goal of the hearing?...

    I think there were a couple of goals of the hearings. One was just -- I think Congress wanted to raise awareness to the country that this was a public health issue, and this was serious and that parents should pay attention to this; former athletes should pay attention to this. ...

    I also think they wanted the NFL leadership to answer for their behavior and to potentially, depending on their answers, potentially have the opportunity to shame them into doing the right thing. ...

    It was a very big day. I mean, it was the most important day up to that point, you know, when we flew down to Washington and knew we had the ear of Congress to -- an opportunity to tell them that this issue is so important to the future of this country that it deserves the attention of the United States Congress. ...

    It was a well-attended hearing from the Congress. It was all the leadership, from the NFL to the Players Association to the medical establishment to the wives, and everybody was in that room.

    On our side we were hoping that we would see brighter days in the future, that we could stop wasting our time fighting the NFL about whether or not this was real and actually move on to solving the problem.

    You mean, this was about really getting their attention.

    Yeah, yeah. As much progress as we had made prior to this point, no one thought the NFL was taking this seriously enough at that point. And I think Congress had the ability to send that message that they need to change, and that was the message I think they heard.

    But it was interesting. Even after that hearing, the first hearing, nothing happened. And it wasn't until Congress announced a second hearing that was going to be the first week of January that the NFL actually changed their tune.

  16. Ψ Share
    Others on this topic:
    A League In Denial?

    Let's go back to [NFL commissioner Roger] Goodell testifying. Your impression of how things went for him that day?

    I think the commissioner would say he had better days. I think he was giving the sorts of answers he gave to the football media that didn't question those answers, and Congress did. They said you run a multibillion-dollar company with injured employees and influence over the most popular game in this country and can't give a straight answer about whether or not you think CTE is real, whether or not -- you know, how you're dealing with this.

    It appears that that appearance made an impression, because what everyone says, the commissioner's a good person who does care about this issue. Although his job is to protect the league, I think he recognizes his responsibility. He's got a responsibility that goes beyond that. ...

    I take it the commissioner, after the hearings in Washington, especially right before the January ones, realizes this is an existential crisis for the NFL.

    At some point between the first and second hearing, I guess the decision was made at the NFL that they would change, and they did a 180 on this. And it happened very fast. I mean, they went from saying this isn't real to it's very clear from the evidence that CTE is an issue and we're going to adjust our game based on the science and try to make it safer.

    And you know, they did a lot of great things, from even just being honest about the risks, putting the poster in the locker room saying, "This game may cause dementia," and some of the efforts they did with the state laws on concussions and being an advocate for making sure young athletes get proper medical care. I mean, all that stuff was really great -- changing some of the rules to the game year after year, experimenting with things. I mean, it's been fun to watch how quickly certain things have changed on the field. ...

  17. Ψ ShareA surprise $1 million donation from the NFL

    ... One of the things he does is of course give BU a million bucks. Tell me about getting that news, hearing the news. How soon was it after the congressional hearings? What was the meaning of it to you guys?

    The NFL's gift of a million dollars is an interesting story, because we never asked for money from the NFL. We had asked them to help us acquire brains for the brain bank and get guys to participate in research. But we knew money would always be an issue because it could be seen as being bought off or some sort of conflict.

    So it was especially interesting the way we found out about it, because the timing was such that it was -- we found out on a Sunday morning, and on Monday morning, a press release had been finalized the previous Friday announcing a partnership with the NFL Players Association. The NFL Players Association was going to be helping -- supporting our research, helping us get brains from players for study, etc.

    And then Sunday morning I got a call from the Associated Press at 10 in the morning saying, "How do you feel about the NFL giving you a million dollars?" The answer was: "I don't know what you're talking about. This doesn't sound right at all."

    So I called around to the other co-directors, Dr. McKee, Dr. Cantu, Dr. Stern. No one had had a conversation directly with the NFL about this. So we issued a statement saying, "We'll consider the gift, and it's very nice of them to offer," and eventually decided that working with the medical school, that they thought if it was given as a gift, an unrestricted gift, it was appropriate.

    It was a surprise. It was interesting. I mean, it was one of those things that at that time with our funding, it was actually a very critical gift, to be honest. So they did allow us to do some really great research with that funding. ...

  18. Ψ Share
    Others on this topic:
    CTE: Discovery of a New Disease
    'A story I want everyone in the football world to know'

    ... How is what Ann is discovering evolving? I think the Owen Thomas case happens. Let's talk about Owen Thomas for just a second. ...

    As an advocate, what was great about Ann's work at the brain bank was not just these amazing scientific discoveries that are sometimes hard for people to understand, but also that we were again putting more faces to the disease and showing that it exists in more places than we thought it did before.

    I mean, if there's anything I've learned about this [it] is that a sport will not take this seriously until you show CTE in their specific sport. And then the age groups won't take it seriously until you show it in a specific age group. So one of the more important cases along the way was finding CTE in Owen Thomas.

    Owen Thomas was a very well-respected kid. He was a defensive lineman at University of Pennsylvania. He had just been elected co-captain of the team after spring football, and then seemingly out of nowhere, he decided to take his own life. Never been diagnosed with a concussion, never had a problem in the world -- you know, great family, etc.

    So when CTE was found in his brain, and not just in a couple of spots, like in the 18-year-old Eric Pelly, but really throughout -- it was there, and it was, from what we understand about progressive nature, going to just keep going -- that was important, because you realize how it was affecting very beloved people, very well-respected people, and showing that frankly it existed in, again, young people, that they were getting it before they ever got to the NFL, before they ever made any money. They were paying a significant price to play this game.

    And in terms of your public relations battle, as you say, it's another bell to ring; it's another cohort to wake up.

    Right. It's a story that I want everyone in the football world to know, that one of the brightest shining stars already had this. Whether or not it contributed to the suicide, he already had this. He was going to be one of those guys maybe in 20 or 30 years that we were then wondering what happened to him, what's wrong with him. And make people think about whether that price was worth it.

    Again, the other place where there's a ton of money being made off this sport is at the college level. We complain about the NFL's work, but they are still taking care of the guys with dementia. And one thing that's not happening is that the colleges are not taking care of their former players with dementia, but are reaping enormous profits from the game. ...

  19. Ψ Share
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    Junior Seau's Suicide

    Then along comes Junior Seau. Tell me about Junior, why he matters, why it mattered in terms of this particular story. ...

    The Junior Seau case was important because Junior Seau was so beloved by the football world, and because he was such a great player, and he played for so long. I mean, everybody loved Junior Seau, and he seemed on the field to be invincible. I met Junior Seau, and he was a very charming guy.

    I think the biggest thing was just that he was so good and so many people liked him. It was an opportunity to say for a lot of people, if this can happen to Junior Seau, well, then jeez, this could happen to anybody. ...

    Why didn't you guys get Junior's brain?

    Well, we didn't get Junior's brain because the family decided to give it to NIH.

    There's a whole lot of stories around the whole controversy of how it got to NIH. ... Take me there, from your perspective. Why would you want Junior's brain? And what happened? Why didn't you get it, from what you know?

    Well, we wanted Junior's brain because we pursue every case of a former NFL player passing away. We firmly recognize that no single case is going to change anything in any significant way, so we knew it was our responsibility to attempt to get it, but we weren't going to go to any more effort than we do for any other case. We weren't going to push any harder; we weren't going to fly across the country and beg the family. That would be inappropriate.

    I spent time making calls. We had a lot of mutual friends. Spoke to people at his foundation and just said, "Like every other case, we would like to review this case, if you want." Never made the ask directly to the family because they had people representing them, but yeah, we asked. ...

  20. Ψ Share

    ... What do you make of the NFL's involvement with the NIH and Harvard Public Health and everything else?

    So far the NFL's involvement with the NIH foundation has been fine. The NIH put out a proposal for pathology work to build a consortium of neuropathologists that was a very -- it was a good idea. It's the right study to fund. So I think the NFL's money, the proposal said it would be used wisely, to advance the research on this, and to get more centers working on CTE. ... It remains to be seen where the funding ends up. And I think that will tell us.

    What will you watch for? What's the key? You guys are not receiving NFL money anymore. By the way, how do they tell you you're not receiving money? It just stops or --?

    It was an explicit one-time gift. There was not ever discussion of presumption of renewing it. So when the money was spent, there was a meeting, and we shared with them some of the work that had been done, and that was it.

    I think wisely they changed their model to choosing who gets money to letting experts at NIH who don't have a horse in the race choose where the funding goes. ...

  21. Ψ Share
    Others on this topic:
    The Future of Football

    And the result of what you guys -- the crusade you guys have been on, when you look at it now out here, 10 years out or whatever it's been, Chris, what have you done?

    Well, I think we've accomplished a lot. I think sports are safer than they used to be. I think we have a research infrastructure that actually gives people like me hope that there might be a treatment for CTE at some point. And at this point we've given everyone the opportunity to understand the significance of concussions and CTE. Whether or not they choose to act on it is still a daily fight in families and in sports leagues.

    But at least -- you know, when I got injured, and I continued to lie about my symptoms, it was out of ignorance. And it's very hard to be ignorant today. Everybody has heard about concussions. Everyone knows they're -- at least some of us out there who think this is a major issue. People now have a chance to change what they expose their children to, to change their own course, to not lose their health out of ignorance.

    Is there anything the National Football League can do? Is there such a fundamental problem that it really threatens football as we know it?

    ... If we continue on the trajectory we're on, we're learning a lot more and quickly, I think we're going to find that football poses a risk to our children that we're not comfortable with. And it all depends on how fast and how far we move to change it before this day of reckoning comes.

    I think the day of reckoning comes the day we can identify CTE in living athletes, and we go scan a high school football team. And if we find one, more than one, 10 percent of the kids who already have CTE, that should dramatically change behaviors or what people are allowing their children to play.

    And if football can change fast enough by being flag up to a certain age, by minimizing hitting and by taking every concussion seriously, by providing medical infrastructure and athletic trainers, and they actually become safe in a measurable way, then football will survive that day. ...

    But the reality is in a lot of ways, on a day like today, I feel like football is too powerful. Even as much as we fight and try to get the truth out there, and try to get people to think about this in the right terms about relative risk, about doing what's right for the kids, we'll never have the funding, we'll never have the voice that the NFL has.

    And they, in a lot of ways, can always control the conversation here. They not only control it at the pro level, but they really control it at the youth level, too. So I don't know which way this is going to go, but I do hope that when kids do sign up that they are protected in a way they deserve. ...

  22. Ψ Share

    Do you worry long term, because of your past, about CTE personally?

    I'd be a fool not to worry about CTE personally. And I also have the images, as a guinea pig in our experiments, to give me reasons to be concerned. So yeah, I mean, I took as much brain trauma as anybody. And my brain is not normal on scans. We're not quite there to interpret what those scans truly mean, but I think I have more than enough reason to believe that I'm going to be fighting this myself. I am fighting it. ...

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