Making a Lasting impact with The Brain Donor Project’s Tish Hevel

Episode Transcript

Dr. Correa:
From the American Academy of Neurology, I'm Dr. Daniel Correa.

Dr. Peters:
And I am Dr. Katy Peters, and this is The Brain & Life Podcast. Welcome listeners to the Brain & Life Podcast. Daniel, how was your weekend?

Dr. Correa:
I just got back from a wonderful weekend. I celebrated my 14th wedding anniversary.

Dr. Peters:
Congratulations.

Dr. Correa:
So, my wife and I, we got a chance to escape from the city and enjoy exploring nature. It's that time with our loved ones, and just stepping away from work and everything else going on in our lives that sometimes matters the most.

Dr. Peters:
I totally agree. And I got to spend time with my loved ones. I was at our annual fundraiser, Angels Among Us, and honors our brain tumor patients, their caregivers. There are patients that have passed away. A lot of families come from far away. I always have this one father from West Virginia that comes to honor his daughter that was my patient. And he was the first person I saw, and I gave him a big hug, took a picture with him, and we just love to honor all of them. There was a 5K and a family fun walk, it's through this beautiful garden space. It was just heartwarming.

Dr. Correa:
I saw your videos. It looked like a wonderful time. It looked like a great event. It inspired me to think of some ideas of doing something similar.

Dr. Peters:
Yeah, yeah. We raised a lot of money. We're very excited, because all the proceeds go directly to research. And I think this is a way where families and patients can really contribute to the research. And this sort of reminded me of who we recently interviewed. I interviewed Tish Hevel. She's helping others contribute to brain research with her unique initiative, the Brain Donor Project. She is the founder and CEO of this project. It's a unique nonprofit organization. And what it really does is, it supports patients and families if they want to donate their brain to science after they pass away. It sort of takes out all the red tape and paperwork, which I think is really a cool initiative. It was inspired by her father Gene, who passed away from Lewy body dementia. And I think we've talked about that disease before on this podcast. And he was a brain donor himself.

Dr. Correa:
Well, I'll have to take a look and see how I can participate in my hopeful future of transition in many later years.

Dr. Peters:
Hello, Brain & Life Podcast listeners. I hope you're having a wonderful day. And we have a wonderful guest to talk to you today. I would like to welcome Tish Hevel to the podcast. Hello Tish.

Tish Hevel:
Hi, Dr. Peters. Thanks so much for having me.

Dr. Peters:
Absolutely. So Tish Hevel is the founder and CEO of the Brain Donor Project. It's a unique nonprofit organization that supports brain banks of the National Institutes of Health, and the NeuroBio Bank. This important project was inspired by her father Gene, who passed away from a condition called Lewy Body Disease. And he was also a brain donor himself. So, Tish, welcome again to the Brain & Life Podcast.

Tish Hevel:
Thank you. It's so good to be here. Appreciate your sweet introduction.

Dr. Peters:
Oh, thank you. Now where are you joining us from today?

Tish Hevel:
I happen to be in Naples, Florida, but the Brain Donor Project operates all over the country. So, when we started it we were in Cincinnati. But yeah, they work everywhere.

Dr. Peters:
Great. Can you tell us a little bit just about yourself?

Tish Hevel:
Oh, you're sweet to ask. So, yeah. My background, I was a journalist during the first half of my career, and ran television newsrooms in three cities. And then I worked in PR, and I also worked as a communications officer for the Red Cross. So it was funny when we started talking about setting up this thing, I thought, "Huh, even though you look at my resume and think I've done a lot of different things, it's like all the things that are needed in this kind of job." So I felt like it was in my wheelhouse to start something like this.

Dr. Peters:
So can you tell us about this Brain Donor Project and what it means?

Tish Hevel:
Sure. I'm happy to. So, I'll tell you how it started. My dad, as you said, was diagnosed with Lewy body's dementia. And this was back in, oh gosh, almost 10 years ago. We did not know what Lewy body's dementia was. So, my family were Googling the heck out of this. And come to find out, it's the second most common form of dementia out there. We kept tripping over it seemed like brain donation, that kept coming up. Because I guess Lewy body researchers thought they might've been onto something at the time, and they needed people to donate their brains. So we made arrangements to do it, but it was very complicated at the time. The NIH had just set up the structure of Brain Banks the year before to accept brain donations. And they just hadn't gotten around to the part of simplifying it, and the public education component.
So,, once my dad passed, we were able to donate his brain, although it almost fell apart the day before. And a lot of people were asking us, "Gee, I didn't know brain donation was a thing. Is it part of organ donation?" And all the questions that we still get. And then they asked, "Will you help me sign up for it?" And I was like, "It's a little complicated at the time." Let me see if I can help them first, because I wouldn't want you to go through what we went through with the complications at the end.
A year after my dad passed, I just picked up the phone and called this guy named Walter Koroshetz, who happens to be director of the National Institute of Neurologic Disorders and Stroke and said, "Could you use some help with this?" And he's like, "Yeah, sure." So, he turned me on to the two women who started the NeuroBioBank. And it's because of their patience in dealing with this non-scientist, that the Brain Donor Project even exists. They did a great job of helping me understand not only what the NeuroBioBank does, but why brain donation is so critically needed.

Dr. Peters:
So, when patients or loved ones go to your website, what do they do, and what do they learn at the Brain Donor Project?

Tish Hevel:
When we started this, our mission was twofold. One, to raise awareness of the critical need. And it's because one in five of us has some kind of neurologic disease or disorder these days. If you think about it, that's definitely more than one person within your circle. So whether it's ALS, or dementia, or Parkinson's, or severe mental illness, there are many, many disorders that are affecting us these days. When you add that to the fact that as we age, our chances of being diagnosed with something, they increase exponentially, and we're all living longer than ever. So you can see where this is headed, and we need some answers. So twofold, one to raise awareness of the critical need, and the second mission was to simplify the process. So what we did was, we started braindonorproject.org. And you can go there, learn about brain donation. And when you're ready you complete a simple online form, and it's in the right hand top corner of the site, any of the pages, and it says brain pre-registration.
When you go there, the initial questions will ask you if you're doing this on behalf of yourself or someone else, so clearly you can do it for a family member. And there's something to the effect of, are we in a hurry, so we know if we need to expedite things. But let's assume for a minute that we're not in a hurry. Then the rest of it is just contact information for whoever's filling out the form, and for the potential donor if they're two different people, and then a diagnosis. And then we take all that information and we determine which of the brain banks in the NIH's structure, which is called the NeuroBioBank, makes the most sense for that family. There are six of them around the country, five that serve the public. So part of it is based on geography, but there are some areas of focus and areas of decline of the different banks.
So we take that into consideration, and then we send that Brain Bank's registration forms to the person who filled out the form. And then once those forms are completed and returned to the brain bank, then that donor is considered a registered future donor of that brain bank. The brain bank kind of takes over the relationship at that point. And so, they provide information about what to do at time of death. They also provide a 24/7 phone number. And it's really important that the person, the donor, or the person doing the form, understands that the family plays a critical role in this. Unlike brain donation, there's no big national centralized list from which experts can see that someone has decided that they want to be a brain donor when they pass. So, it's totally incumbent on the family to make contact when the person dies.
And in a nutshell, the family makes two phone calls, one to the brain bank and one to the funeral home. And then those two entities coordinate this, so nobody has to get in the middle of it at a time when they won't feel like it. And the body is transported to the funeral home, the brain bank sends a pathologist or recovery specialist there to remove the brain through the back of the head so it isn't disfiguring and an open casket is still an option. And then he or she ships it to the brain bank using special expedited partners. Everything I just described is at no cost to the family. The NIH considers this tissue so valuable, that they reimburse everybody along the way who has a hand in it. So, once the brain is removed and shipped, the body is then released to the family to proceed with funeral or cremation, burial, whatever they've arranged.
And you can see that it wouldn't really slow down the funeral at all. The brain has to be back at the brain bank, stored properly, well within 24 hours. Oh, one more quick benefit I wanted to tell you about, and this is kind of interesting. Since they do a lot of different kinds of assessment of the brain before they actually... They call it characterize it, which is kind of categorizing what the person had, so they have that information. And if the family requests it, the brain bank will share what we call the neuropath report. It's a summary of neuropathological findings. And that tells the family exactly what the diagnosis was.
It validates any kind of suspected diagnosis and looks for other things, but also talks about the stage of the disease in the region or regions of the brain that were impacted. And we tell people that's really helpful. Sometimes it explains some behaviors. But for many conditions that are neurodegenerative diseases, Parkinson's, ALS, all the dementias, it's really the only definitive diagnosis that the family will get. And so, someday in the not too distant future when we have a better understanding of the genetic underpinnings of those diseases, that'll be real important information for the family to have.

Dr. Peters:
I couldn't agree more. And I think that really allows the family to grieve and to have that feedback. What have you heard from patients, families or donors, families? What have you heard from them after they get those reports?

Tish Hevel:
It's interesting, because we felt a terrific sense of some comfort in the face of a great loss. First of all, my dad would've been thrilled. We were also able to donate his body, which is a little complicated to do both to two different places, but I can speak to that you'd like. But he would be so tickled to know that all his parts were going to science. He'd be making jokes about it and he'd be so proud of it, everyone would know. But it is comforting. There is a sense of solace. I know it sounds kind of corny but, families report that back to me all the time. Many people are motivated just by sheer altruism. They're like, "Hey, if I'm in a position where I can help somebody down the road not have to go through what I went through, or to help strangers have a healthier life, what the heck? I'm done with these parts. I don't need them anymore." So then when you hear how the family's like, "Wow," now we feel like they've contributed to science and it's a great feeling.

Dr. Peters:
I'm so delighted that you get that feedback. Now, you mentioned your dad again. Can you just tell us a little bit more about him, about Gene, and sort of what was his journey with I guess Lewy body disease?

Tish Hevel:
You're so sweet. My dad was just awesome. I always knew that he thought I was great. And there's nothing like growing up with people that think you hung the moon. So that part was really cool. When he got sick, he was in his early 70s, and it started with personality changes. And he had some hallucinations at night, and we were like, "What is going on?" So my mother took him for an evaluation to a neurologist right away, and he was diagnosed with the first stage, which is called mild cognitive impairment. That's their way of saying, "Yeah, something's going on there. We're not sure what it is. And this could deteriorate from there. But for now, his cognition is compromised." And so, she had him put on some medication right then to help him be higher functioning while he had this disease. And that worked out great, because the average lifespan of Lewy Body's from the onset of symptoms is six or seven years.
And when we look back, he was pretty true to that. But we were able to keep him at a pretty high functioning spot. He was driving, he was socializing. Sometimes he'd say goofy things where we're like, "Filters Dad." And he's like, "I don't have those anymore." And I'm like [inaudible 00:14:05]. But he didn't get really sick until the final six months. So we were fortunate that his journey... And you know, it's a different kind of dementia, Lewy Body's is. We called it a milder, gentler version. Because he knew us till the very end. He was sweet as can be. He was confused a lot, but he was just, we call them sacred days. We didn't have the horrible experience of either a belligerent attitude from the patient, or not knowing who we were, which is devastating. I mean, this wasn't great either, but it wasn't as bad as so many other dementias.

Dr. Peters:
Well, I'm so glad. And Gene now has such a great legacy. About how many donors have you had through this project?

Tish Hevel:
So, we launched the website in 2016. We actually went live in October, so we're starting our eighth year now. And we are about to have 22,000 people who started the process.

Dr. Peters:
Wow.

Tish Hevel:
Yeah, I know. Thanks, I'm really tickled with that. And not only have we been able to help people get this done so they'll be able to be donors when the time comes. And obviously, in seven and a half years, a lot of people have gone on to become donors. But in addition, the registry is valuable, because people share with us what their diagnoses are, so we know some information about them. And that kind of gives us an idea of the burden of the diseases out there. It's like, who's signing up? Our biggest categories are Parkinson's because that disease lasts a long time, which is part of it, that a lot of people are being diagnosed.
And then dementia, all the different dementias, there's so many kinds now. Obviously we're heading into a period where that's going to be pretty pervasive, which is scary. And then the third one is mental illness. That part is sad. There's a lot of people who really suffer from things like treatment resistant depression. And I'm like, "Wouldn't that be awful to feel miserable, and everything you try doesn't work?" So, I feel like we're in a good position to share this information with people who can do something about it.

Dr. Peters:
And I think those are the breadth of the conditions that people have. And I agree with you that it isn't just about those neurologic conditions, but also those psychiatric conditions too. One of our other guest speakers was Dr. Sandeep Vaishnavi. And one of the things he said, he said, "Psychiatry illness is neurologic illness," and that we need to study them and think about them in the same way. So I'm glad that you're representing this whole gamut of things that can happen to our brain. As I told you before when we had this initial introduction, I'm a physician who takes care of patients with brain tumors. And I will tell you as a physician, I hear all the time that my patients want to be donors after they pass.

Tish Hevel:
That's wonderful.

Dr. Peters:
Yeah. And so, I checked out your website, in doing a little research, and I just thought it was such a, I guess I turned it a friendly approach to talking to people about brain tumor donation. I loved how you had the click for the brainy fun fact. I had a lot of fun with that, I kept on clicking. But, could you tell me how you developed this friendly approach about how to talk about it? Because I think that there is a little bit of stigma about even donating organs, when we think after someone maybe is sick or is brain dead, or donating after you die. How did you sort of break through with that friendly approach?

Tish Hevel:
You know, we started working on that right away. Because I thought, I didn't really know how people were going to feel about it. I mean, I know there's a decent percentage of people who plan to be organ donors, and obviously that's not part of this, we have to do something different. But I wanted to see if people were, and I use this word all the time and say, "Hinky," this is my clinical word, "Are people still hinky about donating stuff? Is it creepy to folks?" And one of the pieces of research that I lean on is that, the National Association of Funeral Directors do a study every couple of years, and ask people if they're planning on cremation or traditional sort of a funeral burial situation. And the last time they asked it in 2023, people responded that by the year 2045, which let's face it, is next month it seems like, 80% of us will opt for cremation.
And to me, that's evidence that our attitudes about what happens to our parts after we die have really changed. It's not so much of a thing as it used to be. And so, that's really helpful to me. Because what I'm finding in my conversations with people, once they understand how critical this need for tissue is, their objections kind of seem to fall away. So the biggest problem to me is that, not enough people know about it, rather than having to work to convince them to get past the creepy aspect of this. Everybody has young Frankenstein jokes, which is fine. I think they're funny too. But yeah, it's like people want to help if they can and they know how. So that's where we are.

Dr. Peters:
I think that's great. What do you think is the future for this type of study, and discovery, and engagement of patients in this type of community? What do you think is the future next steps?

Tish Hevel:
Well, I'll tell you what my fantasy is.

Dr. Peters:
Okay. What is your fantasy? [inaudible 00:19:44]-

Tish Hevel:
... me is, that people from all races, and backgrounds and ethnicities become comfortable with the idea. That's a challenge. Because we haven't done a good job of inviting all kinds of people to be a part of science, and then having them trust us or whatever, but it's not what it needs to be. The collection of brains is not representative of the population, and it needs to be. So my fantasy is that everybody feels good about it, and decides that they're going to do it. Maybe that means it becomes part of organ donation at some point, it's a little complicated than it is.

Dr. Peters:
Well, this is your first step, our Brain & Life Podcast, our listeners are here, they're ready to learn from you.

Tish Hevel:
That's fabulous.

Dr. Peters:
So, Tish, I just want to thank you. First of all, you are a champion for this brain donor project. And what I think is so important is that, you're allowing, and you're making it easier for our patients or our loved ones with a neurologic disorder make an impact on science, and make an impact on another person. So, I can't thank you enough.

Tish Hevel:
Well, I can't thank you for putting it that way. That's exactly what we're trying to do, Dr. Peters. Thanks a lot.

Dr. Peters:
Yeah. And I want everyone, all of our listeners, check out the Brain Donor project. I checked it out. It's on the web, it's at braindonorproject.org. And as always, thank you to our Brain & Life podcast listeners. Wishing everybody brain wellness and brain donation.

Tish Hevel:
Excellent. Thanks a lot.

Dr. Correa:
Can't get enough of the Brain and Life podcast? Keep the conversation going on social media when you follow @neurodrcorrea, and @brainandlifemag, or visit brainandlife.org.

Dr. Peters:
Hello listeners, and thank you for joining us today. I'm your podcast co-host Dr. Katy Peters, and I'm honored to introduce our medical expert, Dr. Ann McKee, who will discuss the importance of brain donation. Welcome, Dr. McKee.

Dr. McKee:
Hello, it's nice to be here.

Dr. Peters:
Dr. McKee is a board-certified neurologist and neuropathologist at Boston University, where she is the William Fairfield Warren Distinguished Professor of Neurology and Pathology. Her research focuses on Alzheimer's disease, and also the phenomenon of chronic traumatic encephalopathy, also known as CTE. Dr. McKee has published over 70% of the world cases of CTE, and created and directed the Unite Brain Bank, which is the world's largest repository of brains from individuals exposed to traumatic brain injuries and Neuropathologically confirmed CTE. Dr. McKee, before we get started on the specifics of what brain donation is, can you tell us more really about yourself and where you're joining us from today?

Dr. McKee:
Sure. I'm joining you from the VA Boston Healthcare System in Boston, Massachusetts, where I am the Director of Neuropathology. I'm also a neuropathologist for Boston University, and I direct the Alzheimer's Center there, as well as the CTE Center.

Dr. Peters:
Can you tell us more about really what a neuropathologist does in both clinical care and research for our listeners?

Dr. McKee:
Sure. So a neuropathologist looks at tissue from the central nervous system, and that usually is the brain. But it includes the spinal cord and even peripheral nerve and muscle. For living people, we mostly do biopsies, biopsies that happen during surgery for a potential brain tumor or a brain lesion. And we diagnose things like meningiomas, or malignant tumors, sometimes infections, and sometimes things like vitamin deficiencies. In the more peripheral system, we look at muscles for muscle disorder, and nerve for disorders of the peripheral nerve. But I am a research neuropathologist. Over the years, my practice gradually became more and more research.
And I run several large brain banks. In fact, that has really been the focus of my career, running brain banks. I started running the Alzheimer's Disease Brain Bank back in 1996. I started the Framingham Heart Study Brain Bank in 1997. And then in 2008, we developed a brain bank for traumatic brain injury, or the CTE bank as it's sometimes called. And we now have a brain bank for amyotrophic lateral sclerosis or ALS. We have one for PTSD, we have one for the Gulf war. So, over the last 20 some years, we've really branched into having many brain banks that we work. That is our primary focus of our research.

Dr. Peters:
And how do you choose a disease to study? It sounds like you have several different really collections of brains that have significant neurologic effects. How do you choose and how do you form, I guess, a brain bank?

Dr. McKee:
Well, the reason to form a brain bank is, it's the fastest way to accelerate scientific research. So, I learned that right away in my career. I thought my career was going to be Alzheimer's disease and those related disorders. And I knew from experience running an Alzheimer's disease brain bank, that by study of the tissue of people that have donated their brains after death, that is how we learn the most about the disease. We learn the intricacies of the disease, how it affects certain parts of the brain, where it starts in the brain, what is necessary for things to go wrong. And because of that work on tissue from people who have died, we're able to look for indicators of disease during life.
Based on what we find in the brain tissue after death, we can look for ways to diagnose the disease during life, and hopefully we get clues in how to treat it. So, if we can define basically what's going wrong, then we can figure out ways to intervene and actually treat the disorder. I knew that right away from my early work in Alzheimer's disease, where we set up a brain bank first at Mass General Hospital in Boston, and then at Boston University. That really became the reason we found many scientific discoveries.

Dr. Peters:
Sounds fascinating. I'm a brain tumor doctor. I started treating patients with brain cancer. And during their disease course and their journey, several of them will come to me and it's like, "You know, when I pass, I want to donate my brain because I want to help." They want to help others. What do you think is really the barrier to people going I guess, having the end of their life gift be a brain donation? What do you think is barriers?

Dr. McKee:
I think the first big barrier is, most brain banks won't take a brain donation unless they've seen the person during life. So, there's a lot of emphasis on the person being evaluated during life. And the reason is that, that makes the tissue much more valuable. If you have an idea, if the person was thinking clearly, doing well, aging well. And then they come to post, and you have that data, that information that they were doing well, that autopsy material, the tissue that you donated after death is extremely valuable. Because we know what the person was like during life, and now we have this diagnosis after death. To just come into a brain bank, to have a brain donation be accepted by most centers, you have to have been seen during life in order to give some relevance to that brain tissue.
If we just have a person who dies and wants to donate, it's valuable, but it's not as valuable. Because if we find a disease like early Alzheimer's disease, or we find Parkinson's disease, and we don't know what you were like during life, because we don't have that information, it's harder for us to make use of that tissue in a very relevant way. Now that said, we have quite a bit a need for what we call, control tissue. And people that have lived well, that are doing well, that have aged successfully, that are not having problems with their thinking or memory. Those brain tissues are extremely helpful, whether or not you've been seen in life or not. But if you have been seen in life, and if you've been tested, and found after a doctor looked at you or a neuropsychologist, and they said you are doing well.
If you're doing well, and you come into a brain bank, you're a brain donor, then that tissue, believe it or not, is probably the most valuable tissue we could get. It's very hard to get people who are doing well to even think about brain donation. It's just not on their mind. We are pretty successful in getting diseased brains, Alzheimer's disease, like I mentioned, Parkinson's, ALS for example, and we all know we need treatments for those disorders. So, those donations are very, very important. But to really understand what's happening in those diseases, what's going wrong, we need to compare it to people that are doing well, people that don't have those problems. And that's the limiting factor in most brain bank populations, getting enough what we call, control tissue.
And because I deal with trauma, brain trauma, and the after effects of that, I can tell you that trauma doesn't just affect people in old age, it's often young people. It affects people really through the lifespan. And especially when you consider the low level trauma that I study, like contact sports, banging heads in football, or hockey or, soccer. What we really need in brain banks, what I need is, young people who die tragically, because almost no young people die of natural causes of course. It's usually accidental, or maybe a drug overdose, or sometimes it's because they've taken their own lives. That brain tissue from those folks, because they were normal and they didn't have head trauma, that is very, very valuable.
So, I just want to make a pitch that, anyone can be a brain donor. If you're thinking about it, try to contact a brain bank or a brain donation study prior to your passing. Because you want to make sure, first of all that they can accept you, that they're ready for you. If everything goes well, they can send the materials so that they can be sent back. But they also might need an evaluation of you, and that's best to set up before death. So planning, I know nobody wants to think about their own death, but planning makes it easier, not just for us, the researchers, but it also makes it a lot easier for the family, if the family knows what to expect. It can be a very chaotic time when someone dies, especially if it's sudden and unexpected.
And if a family has an idea what the person wanted, that's often very comforting, and it gives them a clear path forward. And I can tell you with our brain bank which studies trauma, and is very interested in what we call controls, we're happy to talk to anyone. We can walk you through the whole procedure. And if things turn out well, and it looks like you'd be a good brain donor, we can take over after death and make most of the arrangements at no charge. And I think that is for the families that donate, I've been told it's extremely helpful, and even comforting to have someone sort of assisting you at that very confusing time.

Dr. Peters:
And we've spoke with Tish Hevel who started the Brain Donor project. She came to that because her father was diagnosed with Lewy body dementia, and he wanted to donate his brain given his diagnosis, and really had some hurdles in doing it. But she sort of set out some basic groundwork that can help people just like yourself. So, I would encourage patients to check out the Brain Donor Project, check out your group, Dr. McKee, because we want to have your research to move us forward, particularly in regards to things like CTE, and the traumatic brain injury. Because we need to know those mechanisms. Could you just tell us a little more of what you've learned from those brain donors? And about what happens to the brain when there is trauma?

Dr. McKee:
Yeah. So, it's been a long, fascinating, as you said, ride, one that I never expected to find myself in. Sometimes your research, your focus of study sort of takes a left turn when you least expect it. So, it was about 16 years ago, I happened to look at the brain of a boxer. He was actually a world champion boxer. And I was expecting to see Alzheimer's disease, because that's what his diagnosis was. And I found this fascinating disease that didn't have any beta amyloid, which you have to have in Alzheimer's disease. But instead was characterized by this just incredibly detailed and unusual pattern of tau protein. And the tau forms these insoluble tangles or fibrils inside nerve cells. And so, I was immediately fascinated, because I'd never seen this disease before. And it was all over the brain of this boxer, and that was how I got interested.
But then, several years after that, really, I think by luck primarily, I happened to meet several individuals who are interested in the late effects of concussion and other hits to the head. And what we've learned now is, it's not just the concussions, it's all the hits to the head, even the ones that don't make you feel symptoms. So it's what we call the non-concussive hits. And there are about 100 of those hits to every concussion. So it's all of these hits, these little hits to the head that occur in contact sports, they can occur in falls, they can occur in interpersonal violence. So, after I saw the boxer... I'm getting lost here. But, I saw the boxer's brain. I met two individuals, Chris Nowinski and Bob Cantu, who wanted me to look at the brains of football players. And I was extremely interested in doing that, because of what I'd seen in the boxer. But also because I was a huge football fan.
I had no idea looking at them, that they were getting any kind of brain trauma. They've got those helmets on and they seem invincible. So, I was really curious. And my first two cases were 45-year-old NFL players who had died accidentally at age 45. And I saw when I looked at their brains, the same CTE that I'd seen in the boxer, it was very severe, which shocked me for so many reasons, but shocked me because they were 45. I was used to seeing terrible degeneration in older age groups, but in a 45-year-old, that was truly extraordinary. It was beyond really my comprehension. So I was like, "This is happening, and I need to get to the bottom of it." It's happening to very young individuals, so we need to know as much as we can to prevent it, to keep these athletes safe, to prevent this disease from happening. That's when we started the brain bank that dealt with trauma.
It was because I'd started the Alzheimer Bank, and the Framingham Bank, and that bank has been extremely successful, we have almost 1500 brains in it now. But what we're learning is that, this tau-based neurodegeneration can begin really young. And it can occur in high school players, we had players that haven't even reached the age of 30. Our youngest player with CTE is 17. We just published a paper, about 40% of all of our brain donors under the age of 30 have this CTE. Now, these are brain donors that are all contact sport athletes, so it's not generalizable to the average population. It's just an extraordinary percent in this brain bank. And it just tells us that we've got to do something immediately about the way these sports are played. It's not benign to have these guys knocking their heads all the time.
It's not benign, all these hits to the head, the tackles, the concussive injuries. They can start a trigger, a very severe, it starts out mild and focal. In the young people it's generally located in the frontal cortex. But over time, as the person ages, even if they don't have any more trauma, it develops into this widespread brain disease that causes dementia and Parkinsonism, it can cause difficulty with movement. It can cause difficulty with language. And it's a horrible, horrible disease, as horrible as Alzheimer's. So, I don't know. That's what happened in a nutshell over the last 16 years. It's been a wild, wild ride. I had no idea this was happening. And it's kind of shocking all along to discover that, these changes are occurring in really young people sometimes.
You don't have to play 20 years of football, or play at the pro level. You can play collegiate or high school sports and you're at risk. So that's the message I need to get out. I need to get out that we need a lot more research, we need a lot more attention to these injuries. We need to adopt ways to lower the number of hits in these sports. If we stopped hitting our head in these sports, we'd prevent this disease. So, a lot of my message is just education and awareness about the risks of these head injuries, and how we can change how we play these sports, so that head injuries aren't a problem.

Dr. Peters:
I completely agree. And, Dr. McKee, thank you for doing that work. I'm sure that means so much to all of our athletes out there, but also to their parents, and to the loved ones, to prevent those type of head injuries. And I'll be honest with you, I have so many questions for you because this is so fascinating. But one of the questions I feel like I need to ask is, I know you also work at the VA. And those veterans could have been subjected to brain trauma in the line of their military service. Is it similar to what you see with the CTE in the athletes, or are there subtle differences?

Dr. McKee:
Yeah. Well, you know, I do work at a VA. I've been employed at this VA, the VA is in Boston, for some 30 years. And actually, I've been very interested in brain disease in veterans. And you're absolutely right, veterans get more than their share of trauma from many, many different causes. A lot of times they're athletes, because it's the same demographics. People that join the military are often people that are like sports participation. So we see veterans with head trauma from sports, of course, but we also see it from military-related activities. And those can be training activities, like they do some combat training. It can even be from training related to blast and artillery exposures. We're learning more and more about that, that just routine training for grenades and blast can be dangerous to the people who are doing the training. And we're learning obvious combat military-related injuries.
The signature injury of the Iraq-Afghanistan war was these IED explosions. And we know that 300 some thousand troops were exposed to these injuries. So yes, trauma is definitely a part of the veteran experience and the military experience. And yes, we do see CTE in the veterans. It appears that purely military-related exposure and CTE is less common, is more rare than contact sports. So, contact sports appears to be a greater risk for CTE than military-related exposures. We don't have the exact data on that yet, but we don't see quite the same high numbers with just a military exposure. But importantly, we're learning about blast and those IED exposures. And as part of our brain bank, I have examined some of those individuals, and we do see brain trauma. And it sometimes isn't CTE, it isn't that tau-based neurodegeneration. It's actually different changes in the brain.
One of the most prominent changes that's not CTE is a white matter changes, that seem to occur after this blast injury. And, you think of the gray matter containing the nerve cells and the white matter, the connections between the nerve cells, what happens after these BLAST injuries are those connections start to fray and disappear. And so, you can have tremendous symptoms, even though your gray matter looks pretty good. But a lot of those injuries from blast appear to be in the deeper parts of the brain, the white matter.

Dr. Peters:
Well, I can't wait to learn more about that. And of course, I know we're getting shorter on time, but I'd love to ask a couple more questions. One is, with CTE, football, I'm thinking these are male players most likely. Also in the military it's more our male patients or male veterans. Do we see any evidence of CTE in females, and does it differ?

Dr. McKee:
So, great question. We just don't know yet. Because as you just said, title IX was what, 1977 or something like that, '75? Anyway, most women didn't play sports. I mean, it's been recent that women play sports. American football is still primarily a male sport, it's unusual for a woman to play American football. And in the military, it's only recently that women were allowed in combat roles. So, there's a lag period between women that get these exposures, and getting to the point where they might become brain donors. We have some women in the brain bank, it's about 6%. We want to make that closer to 50%, but it's going to take time. CTE has been described in women. The first woman was actually a description in a woman who was physically abused by her husband, and that has been subsequently confirmed in younger... The first woman was in her 70s, but it's subsequently been confirmed.
There have been multiple studies and reports of CTE in women are exposed to domestic violence. The first contact sport athlete who was female, was described with CTE last summer. That was an Australian woman who played professional football, Australian rules football. She was described with CTE. And also in our study that came out in August, we had one collegiate soccer player who died at the age of 28 who was female, and she had CTE. So, I think we're just at the brink of just, it's starting to trickle in, the CTE that can affect women. And we're not at anywhere near being with the numbers, being able to compare male to female in terms of their susceptibility.
We know that concussion appears to be more common. Women appear to be more susceptible to concussion, a symptomatic concussion, and they take longer to recover. And some people think that's because of the thinness of their neck, maybe the weakness of the neck musculature relative to men. But other people think it's the biology of the brain, and the gender differences just in the biology of the brain. So, we still don't know. It's obviously a really critical question.

Dr. Peters:
So I'll have one last question. What's the next step in brain donation that our listeners need to know about?

Dr. McKee:
The next step, I just want to reiterate that people that are doing well, it may be the last thing that they're thinking about. But people who have lived well, are doing well, don't have these terrible diseases to consider it. We need normal brains at all ages. So, if someone dies accidentally, and it's a horrible, horrible tragedy, but think about brain donation, just think about it. It's a way to honor the legacy of the loved one. And it would just tremendously advance scientific research. So that's my biggest plug.

Dr. Peters:
Well, I like that plug. And, Dr. McKee, you honor us with your presence and your knowledge, and I can't wait to learn more from you in the future. So, continue the great research.

Dr. McKee:
Oh, well, thank you.

Dr. Peters:
I just want to thank again, Dr. McKee, and thank her for all of her insights and her expertise on brain donation, and also about CTE. And I want to also thank our wonderful listeners. Have a great day.

Dr. Correa:
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Dr. Correa:
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Making a Lasting Impact with The Brain Donor Project’s Tish Hevel

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