Broken Brains with Bruce Parkman
Broken Brains with Bruce Parkman is presented by The Mac Parkman Foundation
The mission of this show and the foundation is To serve as a source of information, resources, and communications to the community of parents, coaches/Athletic trainers, medical staff, and athletes that are affected by sports-related concussions and to raise awareness of the long-term implications of concussive and sub-concussive trauma to our children.
Broken Brains will also explore how Concussive Trauma impacts our Service Members and Veterans.
Join us every week as Bruce interviews leaders and experts in various Medical fields, as well as survivors of Concussive trauma.
Broken Brains with Bruce Parkman
#15 Dr. Chris Nowinski: Addressing CTE in sports and the NFL
In this compelling episode of Broken Brains, host Bruce Parkman sits down with Dr. Chris Nowinski, co-founder of the Concussion Legacy Foundation, to discuss how repetitive head impacts in contact sports, blast exposure among veterans, and the growing crisis of chronic traumatic encephalopathy (CTE) are shaping the future of brain health. Dr. Nowinski shares groundbreaking insights into the progress of CTE research and the urgent need for solutions that diagnose CTE in living individuals. Together, they explore how this could lead to revolutionary treatments.
The conversation also addresses the denial of CTE by major sports leagues, including the NFL, and the critical need for better player treatment and safety protocols. As the concussion debate continues, Dr. Nowinski highlights the importance of reducing head impacts in youth sports and high school sports, advocating for policies that protect the developing brains of young athletes.
Education, legislation, and continued research are essential to reducing the long-term risks associated with repetitive head impacts. The episode provides hope and urgency for a brain health revolution, aiming to create a safer future for athletes and veterans alike.
Tune in to discover how the Concussion Legacy Foundation is leading the charge for change and how we can all contribute to safeguarding the next generation’s brain health.
Broken Brains with Bruce Parkman is sponsored by The Mac Parkman FoundationSupport The Mac Parkman Foundation by donating today!
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Chapters
00:00 Introduction and Focus on Repetitive Head Impacts
03:07 The Changing Focus on CTE Research
04:48 Addressing CTE Denial in the NFL and Other Sports Leagues
07:20 Improving Player Treatment and Safety
14:25 Reducing Exposure to Contact Sports for Brain Health
17:16 Understanding the Impacts of Repetitive Head Impacts
22:12 The Effectiveness of Guardian Caps
25:26 Legislation and Diagnosis of CTE
29:34 Diagnosing CTE in Living People
32:25 The Link Between Repetitive Head Impacts and Mental Health
35:02 The Role of the Concussion Legacy Foundation
Learn more about Dr. Nowinski and his work by clicking the links below!
Website: concussionfoundation.org
LinkedIn: Christopher Nowinski, PhD
Produced by Security Halt Media
Hey folks, bruce Parkman here, welcome to another episode of our podcast, broken Brains. With me, your Bruce Parkman, and we want to thank the Mack Parkman Foundation. And, as you know, this show is all focused about brains, focused on the impacts of repetitive head impacts and repeated blast exposure, the impacts on the brains of our children, our veterans and our athletes, and we're constantly out there looking for, you know, the leading edge on brains with research, community, veterans and athletes themselves, parents of kids, and trying to address the fact that we really need to look at contact sports and military service from the perspective of what that is doing to people's brains and then the resulting mental illnesses that is causing a lot of tragedy in this country. Well, on our search for people to come on the show, we have, now that we have today, a distinguished guest, mr Chris Nowinski himself, who is the head of the Concussion Legacy Foundation, a friend of our foundation from the start, way back in the day, and not only is he a co-founder of the Concussion Legacy Foundation, this is the leading organization that's dedicated to the fight against concussions and chronic traumatic encephalopathy. His name is renowned in the industry, on social media, on news you can hear him all the time out there speaking on this issue, and he's been the leading advocate. Him and Dr McKee have led the fight on CTE and have taken on literally everybody from the national media to the sports foundation. He's an all-Ivy Harvard football player that turned WWE professional wrestler and then turned into a neuroscientist on his pathway to uncovering the problems of CTE and trying to address it in any way he can. In 2003, a kick to the chin in a wrestling match ended his career, causing him to have post-concussive syndrome, which gives him a very personal perspective on this issue itself.
Speaker 1:No-transcript for all of our audience out there. And then he's now co-founded the Unite Brain Bank at the Boston University CT Center, and he's also served as a co-director of the Boston University Center for the Study of CTE from 2008 to 2014. His journey has been profiled in media. As I said, he's a subject at award-winning documentary Head Games, the Global Concussion Crisis, and he is a prolific Xer, now the Twitter fighter, and he's all over the place on this issue. We cannot think of a better guest to have on this program. Chris, welcome to the show, sir. Thanks for having me, bruce, good to see you. Good to see you. Well, I know you're busy man. I know we see you all over the space out there. So what's going on with CTE right now In your perspective? Obviously we still have a problem with it, but it seems like some of the focus on the aspects of CTE might be changing.
Speaker 2:Well, you know, science is constantly evolving, but also the discussion is evolving. You know, we went from a place where, I think five years ago, I was completely focused on getting everyone to accept cause and effect, to unlock the ability to prevent this, and we were able to do that for some organizations with a paper in 2022, based primarily on Dr Ann McKee's work at BU, but many others around the world, showing convincingly that we've known cause and effect has improved for a long time. We got the National Institute of Health to change their statements on it. Nfl has changed their statement on it, while there's still some stragglers. I think the next phase is, you know, we're still really laser focused on let's diagnose this to living people so that we can unlock real treatments. And I think we are now on the cusp of being able to diagnose this to living people and start teaching doctors how to diagnose.
Speaker 1:And that's a big issue. I mean, we know that in the NFL CTE denial syndrome has been kind of the issue of the day but, you know, due to the efforts of you and Dr McKee, they've really had to kind of accept the fact that CTE is for real. Are you seeing any improvement in the players you know, and the treatment of the players when they exit the NFL? And what's the NFL and other sports leagues? I've seen you, you know, address the NHL lacrosse. You know world rugby right now is having an enormous problem with early onset dementia. So you know we seen any improvement in the treatment of the players, you know, due to the advocacy that you've had over these, over these last years.
Speaker 2:You know, not as much as we'd like.
Speaker 2:I mean, I think you're right, like world, world rugby, international soccer, outside of the premier league, you know they're still in denial, although they are starting to accept that they need to be making some changes, but I don't think they're changing fast enough, partially because they're trying to deny it to protect themselves from certain lawsuits.
Speaker 2:I think was my opinion, I think you know, I think the best example I used to have an op-ed in the Boston Globe this morning where I'm actually commending the NFL, which I used to haven't done in a long time. You did what you know. They're changing the kickoff this year they're putting guarding helmets on in games which, again, the data is not crystal clear but based on their data, it's fair to allow it and I make the point that that's great. But you know what. We're not doing that at every other level of sport the NFL, primarily because the NFL Players Association now accepts CT causation. They're trying to prevent it and the game is changing every year and it's getting safer every year. But they are a bit on an island in the sense that they're no one's trying nearly as hard as they are to prevent CT in their athletes.
Speaker 1:Do you think it's because they're realizing that they own football? I mean there's no nonprofit, there's no USA Soccer. I mean there's no USA Football. I mean there's no nonprofit, there's no USA soccer. I mean there's no USA football. I mean they own it. And for them to make those changes, like I did watch one of my first NFL games and they said, man, they're awful close on that kickoff. Wow, they must be trying to eliminate some of the concussive exposure that is. And then the next day I go to a local high school football game who the coach is a former NFL player, mike McGlynn, and he invited me over because he's very much aware of this issue. You know having, you know coming out with his own issues, but you know. But then I see these kids lining up on both ends of the field just like normal. And man, chris, these kids can hit. There were so many concussive blows during that game, I was appalled. So if the NFL can make these changes right, what is happening from going downstream? Because that's where the real damage is taking place?
Speaker 2:Right, and it's a funny thing because the other way to look at those changes is that it's too little, too late for those players. For the most part, right. Like you know, you have the. The football machine is you got to play at least 10 years for you to get a fell. And some people are playing, you know 15, um, you know 18 years before they get the nfl, and if that's the case, um put you. It's sort of like lipstick on a pig. That small change in the NFL is going to matter.
Speaker 2:So how do we convince NCAA, high schools and youth to make those radical changes? And the answer is I don't know, because I've been trying for 20 years. The NCAA has embroiled in so many lawsuits around this that you know they're never going to admit it. And then the National Federation of High School Athletic Associations put out a statement on this that I linked in this article. Go find their statement on CT, nfhs research, ct. It's ridiculous, but they're getting really bad advice on this and they're basically saying, look, we only have them for four years. So I'm, you know, sort of like saying if we got CT, it's probably not our fault, it's probably before or after.
Speaker 2:It's like this. For me that's a big lack of character issue. Like football is supposed to teach character right. Like just because you only owned them for a portion of their career doesn't mean you aren't responsible for who they become and how that happens. So I don't know. So that happens. So I don't know. So it's I'm I. I enjoy trying to fix football because I feel like I bled enough on that field to to talk about it, but I'm disappointed.
Speaker 1:Thus far I other than the nfl players association fighting for themselves and the nfl's doing some innovative things on top of it and if they're going to improve the safety of football, even at the professional leagues, they should be improving how they take care of these players. I mean, obviously they're making these changes because they're aware there's a problem. I mean you would not shorten the kickoff distance if you weren't trying to prevent an issue. So therefore, you've admitted you have a problem and that problem is concussive trauma, sub-concussive trauma and eventually a CTE diagnosis. So now, if you've recognized the fact you have an issue, you know what can the NFL do on the other side to address the large quantity of NFL retirees that are out there that are suffering in silence, that we hear about only when they blow up and they end up in the news, unfortunately, right. So we, and you and Dr McKee, have demonstrated through the Unite Brain Bank that you know we have.
Speaker 1:You know CTE is only found really in contact sports victims, right, or anybody from. You know domestic abuse, but you don't find this in. You know your average, right. So what can the NFL do and what? What can all sports leagues do? Right, mean you got dimensions and soccer. You know from all these football players getting hit at 100 miles an hour in the head. You got. You know rugby, you got lacrosse. You got nhl. You got wrestlers right, much like yourself, and and and other. You know diane the, the young lady that took her life I think it was last year and and we had my son wrestler right, full-time wrestler. So you know, but at but at the NFL, I mean at the level. If they're going to lead the way in safety, how do they lead the way in treatment? What can they do?
Speaker 2:Yeah, that's. I don't know if we're going to solve that problem right. So the NFL concussion settlement you know they expected to pay out $700 million. They've paid out over $1.3 billion thus far because so many players are affected. The actuaries totally undershot it because they didn't realize, like when players are struggling this much, they're not going to come forward. And then, but when there's a reason to come forward because you can actually take care of your family, they're going to come forward. So I think the NFL would just argue look, we made the settlement and it's not a problem anymore. They negotiated the settlement and they get what they get.
Speaker 2:And that's unfortunate because CT is not even part of the settlement and the Washington Post has done some really great investigative work on how these players are not getting what they thought they would be getting. Insurance companies are getting paid a ton of the money that should be going to players because they've been paying for the care. So I mean, the retired players have just been a problem forever. It's a hugely expensive problem. It's one that no one's going to hand them the money. The systems they've set up to try to help players are confusing and hard to navigate, so it's depressing. I just found out, we've helped more than 200 former NFL players through the CLF helpline, which is free to everybody. But the fact that 200 of them come to us when there are all these paid people that are supposed to be helping them is shocking. But there's also the other issues. We can't fix them. You know we do make a ton of them. When they get to a good doctor they get a lot better. But we can't fix the CT problem.
Speaker 1:Right and and and and. You know the thing is too is that when they, when they do get out, the collective bargaining agreement doesn't, to your point, doesn't recognize CTE. It also doesn't recognize, you know, you know major mood, you know cognitive, psychological or you know behavioral disorders as a result of the damage to their brain. And so not only are they out there on the phone, but right now we don't even have billing codes for this. All right. So if we were so, say we were to get CTE recognized, right, cte or you know, you know TES, you know traumatic encephalopathy syndrome or any of the brain damage, even from a car crash, right now you can come to a doctor and you can get therapy and you can get drugs, but you can't get anything that's going to address the primary cause of the symptoms, which is a damaged brain. And yet we have modalities out there that you know.
Speaker 1:I was talking to Dan Javar yesterday that they're working on, up with some of the partners, the BU, psychedelics, all this stuff, all of this is out of pocket, and even for the NFL players. So I think we're going to have to get a little bit more innovative on that. So, yeah, I mean to your point long way to go. But again, the NFL has had no contact practice for a while and I don't even think we're seeing that in high schools at all, are we?
Speaker 2:Well, I mean on paper, you know some States. They say no more than 90 minutes, no more than two days a week, but again, it's not enforced, it's not. They're not educating around why. There's no CT education coaches, and so I don't. Who knows if it's being followed. I mean, I, I, literally I work with one team in one league where they're down to 15 minutes a week and they almost never hit. And I talked to another kid who I thought was you know, in that league and he said no, we opened up our practice with tackling drills. You know, it's like it just all depends on what your coach thinks about you know if CT is real or not, and that's a shame.
Speaker 1:And so now you know, and of course a lot of our audience is parents, right, can you explain? You know, and of course a lot of our audience is parents, all right, can you please explain to them? You know why this is an issue? Because I don't think there is. You know, there is no safe amount of tackling that can be done. I mean, if we're going to do something right, we need to do it right, but explain to our audience. You know why, especially at high schools and below, you know this is critical. And talk about your Flag Till 14 program, because we all know about flag football now really taking off.
Speaker 2:Yeah. So you know, all this discussion and battles of the NFL has really been more about how do we make things brighter for the two million kids playing youth and high school football, because what's happening NFL players is sort of the tip of the iceberg because they've played longer and taken more hits than what's happening to a subset of youth and high school players. And so I think our mutual friend, dr Dan Shuar, has done some great publications that have helped put some numbers to this, and the idea is that when you're in youth football, the average kid's taking 250 hits a year. That average 20 or so Gs per impact, and it's very similar to what college players experience. And high school players actually take more acceleration to the brain than both of those other two levels, according to all these sensor studies. And so when we are, when you're playing football, especially, like you know, in certain positions, take more hits, you know you could be, you know, walking out of high school football, especially if you're both ways, like you know, more than a thousand hits a year, and that stuff, every hit, is increasing your risk of CTE and so the and of concussions and then the I just did an interview on concussions for you know talking about for doctors, and what we got focused on was look, the youth coaches don't think they're getting concussions in their kids, and part of the reason for that is because kids can't self-report, because they don't understand it.
Speaker 2:All the tools we use to recognize concussions, like hey, you know they walk to the wrong hollow, they forget the plays, they don't know the score, like kids don't know that stuff. Anyway, there's no athletic trainers there to spot the concussions. Coaches don't have any training to spot the concussions. So we know they're happening and we're not diagnosing them. And so you're both.
Speaker 2:We've got kids playing through concussions and taking hundreds of head impacts a year and that is going to change the brains of a lot of these kids. And even if they don't get CTE, we're talking about white matter damage and all these other things that we are learning how to quantify to show like, no, this is not the brain they walked in with, this is a different one, and that's going to make them different and not in good ways. Going to make them different and not in good ways. And so I think that you know the message to parents has just been like, look like. I know we want our kids playing sports, but the football specifically is not trying very hard at all to protect your kid and talk a little bit about that damage in the brain, right, I mean, because that's what you know.
Speaker 1:I think the parents are starting to really start to understand. Is that all right? I know that the concussions are not good. Well, we've been focused on concussions for a long time. Okay, got that, we got all got. Without a surprise, we'll talk about this a little bit. But Florida doesn't even have a concussion training program for parents right now. To you know which is something that we're working on with the state right now, but you know which is something that we're we're working on with the state right now. But you know. So what's going on when, when the kids have these hundreds of blows right, that we all like even myself, up until I had to learn all about this stuff we think are innocuous, ah, they're fine, they're just a little, they're not right. So why? Why are they so important to, to parents that are concerned about their, their children's, brain health? What's going?
Speaker 2:on inside their head.
Speaker 2:Yeah, I'll dig into that and I think maybe I'll start with just sort of like apologizing and recognizing your shirt the Subconcussive Trauma Summit, because I know Dr Dan Jouard and I published a paper that came out about that time saying you know, we don't want to use subconcussive anymore, we want to use non-concussive. And the reason for that and I mean I love the concept, so don't get me wrong but what we've learned we don't like about sub-concussive is how people use it. Well A they're both confusing sub-concussive injury and sub-concussive impacts because they're used interchangeably. But also sub implies to our brain less than. And what's clear when you look at the sensor data is that we have a lot of the average concussion is happening at the 90th percentile of the impact that an athlete takes. So like if your biggest hit over the season was 100 Gs we're talking about the concussion happened at 90, but that means there's this, this group above, and so a lot of times even good colleagues of mine will say in the press it's not the concussions when you have to talk about ct, it's the repetitive smaller hits and it's. And what I would say is no, no, it's not the repetitive smaller hits, it's the repetitive bigger hits. If these hits are happening at the 90th percentile. If an athlete takes 1,000 hits in football and they get one concussion, that's going to be at the 90th percentile. 900 hits were below it but 100 were higher. So the idea that you're going to have 100 hits harder than that concussion. Some of those are going to be doing what we're terming subclinical brain damage, subclinical traumatic brain injuries.
Speaker 2:Your brain has, as you know, but for the audience 80-some billion neurons, trillions of connections. Just ask that question If you injured one of those 86 billion neurons, you killed it from an injury would you feel it? The answer is, of course, not. So the question is how much of your brain can you injure before you feel it? And that's what makes concussion a terrible measure for brain injury is because, as someone who took 10,000 hits to the head, you know that there were hits where you felt it and then there were hits where you were like I'm surprised, I don't feel anything. But that's just because you didn't injure the things that you feel. You could have injured another part of your brain. What some doctors have heard is a non-salient part of your brain. That's not going to cause you to have double vision or memory problems, just balance issues or all these other things.
Speaker 2:So we're basically, when kids are getting hit hard and they pop up, that's not necessarily a good thing because their head twisted rapidly, an axon pulled. Your axons are 1 20th width of human hair, some of them are very long, um, and if it got injured it might, you know, fix itself. If it got ripped you're going to see a retraction bulb and an axon, just you know, just sort of get pulled back, uh, to disappear back the neuron and you've actually changed the architecture of the brain and you can destroy who knows how many axons with some of these huge hits where you feel fine, and so that is sort of we hope people realize like those hard hits are causing brain damage, that we aren't feeling. That is why we don't see a correlation between diagnosed concussions and CTE, but we do see a correlation between hard hits and CTE and that's what people need to picture happening in the brain when they're letting their kid get whacked in the head too hard.
Speaker 1:Plus, you know, a lot of people know the brain doesn't feel pain. So I mean you can tear those things up and then you got the whole issue of neuroinflammation which, after a certain amount of time and the continuous repetitive impacts you know, continues to, it starts feeding on the brain itself and it causes more damage at the molecular level. So I mean there's a lot of things that parents, you know, don't understand because of that. And whether we say subconcussive or non-concussive, you know we all are on the same page. There's a lot of hits taking place that aren't concussive and that's the root cause of the damage and that's what you cannot prevent in football.
Speaker 1:So let's go back to these guardian caps. I've taken a look at these and I've actually talked to coaches that use them and I've had one coach tell me the only concussions they ever got on the practice field was from those darn caps because of the way they catch the turf and bounce that hit around after they hit. So what's your professional opinion? These are getting a lot of attention now. You know. Obviously they're pads and people are assuming that you put a mattress on your head. That's making football safe. So, as a brain specialist, what's your perspective on those caps?
Speaker 2:Yeah, I mean I think CNN did a nice article on it this week, so you want to go deep in the audience. But basically the idea is this they work in a lab Anything you know. You put a pad, the hit's going to be less, but football impacts are three-dimensional impacts that involve rotational acceleration vectors, and it's very complicated. And what they found is that, even though the pads work in a lab, when you actually put sensors in the helmets to see, is the head moving more slowly? Is there less energy getting to the brain? Those haven't borne out, and so so it's like one of those things that it's.
Speaker 2:I don't. I'm trying not to be, you know, too prescriptive on this. I I'm trying not to be too prescriptive on this. I'm just saying, look, the data is not rock solid, that it does anything positive, but there's also some people I respect who do believe in them, and so I'm just saying, you know, if you have unlimited money and you want to give it a try, the downsides we were worried about heavier helmets, bigger helmets, more impacts haven't really borne out. So I've adjusted my position to just sort of be like I don't know.
Speaker 2:It's not clear. The NFL's data hasn't been published yet. That said, which is a different guardian cap than the kids are wearing, but a bigger, heavier one. We don't know if that's behavior change, practice changes or the padding itself until we see the data. So yeah, I'm not excited about it and I think people need to realize the more we talk about guardian caps, the more we're missing the big picture. It's sort of like if we're talking auto accidents, do we want to be talking about speed limits and stop signs, or do we want to be talking about bumpers? Well, bumpers are way down the list to protecting you from car accidents, and that's where we're at right now.
Speaker 1:We need.
Speaker 2:Well, bumpers are way down the list to protecting you from car accidents, and that's where we're at right now.
Speaker 1:We need to be way higher upstream talking about the rules, and the rules are important. I'm not a big fan of those caps because of what we just talked about, the little hits that are doing most of the damage. You can't prevent the brain from moving around inside the skull. There's nothing that God has ever made that we will ever make that stops that. So you know the, you know the. The only way to really reduce the risks of CTE and uh and and all the damage to the brain is to reduce exposure and and that goes back to the kids not participating in contact sports at all.
Speaker 1:And I think that if we could work hard, work harder to expand what you've already done, now tell us about some of the. You know you've done a wide variety of public service announcements. I mean you've worked with Brett Favre. You've had the smoking video back in the day that caused a lot of issues out there. You know kind of pushing forward on the issue of the fact that kids just should not be playing these sports. You know how effective has that been to date?
Speaker 1:And what else can we do as a community to get this word out there? Because you know the CDC still doesn't list really repetitive head impacts as a significant concern. We can't get anybody from the parental communities to really adopt this. You know, as a as a parental concern. We can't get anybody from the parental communities to really adopt this. You know, as a parental concern. You know NIH really doesn't, you know, make it. This is not a known risk like concussions, and you've done so much work in this space. What else do we need to do to get this? You know whether it's in front of you, know legislators, you know insurance companies to go ahead, and because there's got to be a better mechanism to enforcing the fact that we are truly jeopardizing our children's brain health and their futures when they put on helmets at a young age.
Speaker 2:Yeah, yeah, yeah. So the question is why isn't what we want happening?
Speaker 1:Yes, I mean you've done so much. I mean, come on, brett Favre goes out there, and how does Brett Favre not get parents to listen to him, right, I mean?
Speaker 2:Well, that's the surprise. You keep trying new things. You think you've found that message that's going to connect with people, and then it doesn't hit like you think. You know, we've created a couple of powerful PSAs and won awards. Basically, we don't have a lot of money so we can't pay to have them everywhere, we can't get them on TV, but they're provocative enough that they get news coverage. So the Brett Favre one debuted on the Today Show and the smoking one was covered in all the news programs because it created kids smoking on the football field and making that connection that both those things are bad for you, and I think part of it is like you got to keep trying and refining the message, which is hard, and then part of it is people.
Speaker 2:Science changes faster than people, and so A we continue to strengthen the science, but we're battling the assumptions about the science from 10 years ago versus what we know today, right? So again, when I'm talking to coaches on Twitter, they're still repeating NFL talking points from 2007 that the NFL would never say now, right, but that's when they dealt with this. They learned it and now it's hard to change their mind. So we got to keep. We can't give up on continuing to educate and then we have to continue to strike those signs and we have to find those windows where we can actually change hearts and minds. We we thought we had it with legislation in California. I did not anticipate Gavin Newsom would veto, would threaten to veto, a bill that would create an age minimum for type of football in California.
Speaker 1:And we both testified on that bill too, man, but I think they went the wrong way. You can't ban things. I mean, I think we're having a lot more success with informed consent and actually California is working with us now to go ahead and address this from a new perspective and I think that's a more palatable way, I'll say, to go. But I do think, to your point, legislation is going to have to be involved. If we cannot, you know, get, I mean right now, the issue of RHI you know repetitive hit impacts, subconcussive, non-concussive impacts is not taught in any medical or psychological curriculum in this country, I mean our doctors and nurses. There was a study have you seen that study in the New England Journal of Medicine where like 60-something percent of doctors, family doctors, would recommend playing contact sports to dads. They would. I remember that one.
Speaker 1:Yeah that one. Just that was just released. Somebody let that one on me. Not too long ago they had a survey and they just sent it out and 60-something percent of the doctors out there thought it was okay. They would not object if a dad said can my son play contact sports, my 8-year-old son? Because they don't have the information and they're not educated and I guess there's huge amounts of stigma that you personally have been fighting for quite some time. On the diagnosis front, you mentioned CTE and VIVO. Where are we with that right now? If we can identify the fact that you're on the path to an eventual CT diagnosis that you're probably on, I'm on for sure when are we at right now for parents and doctors that are getting patients that are acting out? They've got extensive histories of contact sports exposure. Where are we at right now? Is there anything that can help them?
Speaker 2:Well, you mentioned earlier the TES criteria. So the traumatic encephalopathy syndrome that you know BU is working on, so it's just it's getting better. So, basically, like they published one in 2014, they've refined it, published another 2021, refined it and they're trying to find, like, like you know, what is that clinical criteria? You have these three things and you don't have these 10 things and therefore we can predict you're going to have CT with this accuracy. That is getting closer. You know, I don't know when we'll be ready, but it's getting closer. And then the other part is that that's with symptomatic people, and then the other part is that that's what's symptomatic people. And then the question is biomarkers right, what can you pick up that's not related to symptoms? You know certain things on your MRI, proteins in your blood, things on a PET scan, and that is getting better too. We finally have more studies working on it. We're on the fourth PET scan that we've tried.
Speaker 1:We will get there. It's just a question of how fast can we get there and what's the PET scan showing? I mean, they're showing that they give it, because I think the big part is, once we have diagnosis, we can move on to the next problem, which is we have no billing codes. Right, we can't cover treatments right now that can heal the brain. So you know, because I've heard of fMRIs and DTI scans and SPECT scans, but PET scans are new. Are they showing?
Speaker 2:PET scan is the one where you can definitively bind to the tau protein. That is the diagnostic criteria for CTE. So if you want to find tau proteins in the pattern of CTE, you'd have to use a radioactive tracer of something that you inject binds to the tau for a period of hours. Get in the pattern of CTE? You'd have to use a radioactive tracer of something that you inject binds to the tau for a period of hours, get in the scans to see it and then know that you've got it. And the problem is that all of the original tau tracers were developed for Alzheimer's disease, and it wasn't discovered until 2019 that the tau misfolding is differently shaped than Alzheimer's disease and so the binding doesn't work in the same scale. And so we've picked up signals, but nothing definitively enough. And I just became aware of, like, the first tau tracer that was built from scratch that's supposed to bind to the tau protein with the CT shape, and so maybe that'll be it. You know, we just got to keep getting more shots on goal.
Speaker 1:And we got the TES protocols, which are basically four simple questions that anybody can ask. And I think that we're also working with BU and coming up with some other research problems, because the sooner we can get those validated out, then any nurse, any doctor, any parent really can look at their kid. And I think you know and, and and and and ask those four questions. But you know, the last point I want to bring up is the issue of mental health, and we do know that. You know the really the only indicator that we have right now that somebody's struggling if we could correlate it is if they played a lot of contact sports, then they have behavioral, psychological and cognitive disorders, that there can be a causal link between the two as a result of playing contact sports.
Speaker 1:And I know that everybody's trying to get that word out and you are too. So, as we come to a close here, what else is the CLF doing? What's Chris Nowinski doing? How do people track on you? If there are a couple of the few ones out there in our network that haven't heard of you yet? How do they keep up on top of what you're doing? And what else are you working on right now?
Speaker 2:Yeah, I'd say, if you want to stay in touch, go to the Concussion Legacy website at ConcussionFoundationorg, sign up for our newsletter, sign up for our research, for our clinical research, or pledge your brain or come to our helpline. We're nearing 7,000 families that we've helped one-on-one through the helpline. If you have symptoms that you're worried about and need advice on doctors and support groups and that sort of thing Also, yeah, on all the social medias, I would say keep following that. And then I mean we're working on now, like this month, like next week, I'll go out to the Tau Consortium where we meet, like all the top people working on trying to advance the science on how to diagnose and treat tau diseases, and so a lot of those folks have become collaborators over time. So that'll be exciting. I mean I'm always either looking at research or I'm looking at prevention efforts. So this week's a ton of interviews around.
Speaker 2:Why aren't people trying to prevent this more? And then it's continuing to take care of people. Every day someone's reaching out to me with my buddy, this, my dad, that my old teammate. We're just trying to keep them alive so that they can both recover from whatever they're dealing with, because, as you know, for a lot of people mental health, they'll respond to the right treatments. Not everybody We've all lost. You know as well as anyone. We can't help everybody. I dealt with it with my college roommate that we all thought, oh, we just put enough money together and get the right doctors and everything will be fine. And it didn't work and he passed away with CTE so yeah, so it's just a constant battle to fight on all three of those fronts prevention, cure and helping people now so that we don't keep losing people.
Speaker 1:And folks, just so you know. I mean Kristen Winske's organization was critical in our own tragedy when we lost our son, tragedy when we lost our son. They were the ones that responded to our call after we met with another stopctorg that led us to Boston University and the eventual understanding of what took our son's life and we cannot thank you enough for the help you do there. And we do refer and recommend that if anybody you know has, you know, is acting out, suffering from mental illness and that you know has played a lot of contact sports and even soccer is a contact sports you start hitting that ball, then you should be reaching out to the Concussion Legacy Foundation Because they have an amazing network of experts and type of specialists you need.
Speaker 1:Chris, can't thank you enough for coming on the show. Really appreciate the time, the efforts that you're doing. Look forward to continued collaboration. We'll have our conference in DC next year. Hope that we can kind of get your timetables linked up so you can come down and lighten us up and tell us what's going on. Best of luck in all of your endeavors with, you know, ct, the research and just the advocacy you're doing. You are a warrior in this space and we really appreciate your efforts.
Speaker 2:We appreciate it. Bruce, Thanks for all you do for CLF and all you do for BU and everything.
Speaker 1:Well, we'll keep it going, sir, you take care and we'll catch you soon. Catch you again. Thanks listening.