Research scientists in Boston wish they had more brains.
One they can expect is that of a former Harvard University football player who wants to know, preferably before he dies, exactly what happened inside his skull after he was kicked in the head during a professional wrestling match in 2003.
A brain the researchers have already examined came from a Navy Special Warfare veteran who lost his battle with head injuries in September 2018, to suicide.
The scientists, the former athlete and the surviving wife of the 25-year retired Navy chief are making the same uneasy ask. They want anyone who is willing to donate that most complex and mysterious of organs, regardless of its condition or how it functioned during life, so more can be learned to prevent and treat brain injury and disease. While their primary targets are former football players and military veterans, they
will take – and need – all the brains they can get because the more they have, the more can be learned to improve chances to save lives in the future.
“It’s not like a normal organ donation, which doesn’t include the brain,” says Nicole Condrey of Middletown, Ohio, who endured her husband’s downward churn through a three-year storm of traumatic brain injury issues – depression, anger, impulsiveness, withdrawal, suicidality – until he shot himself in the chest while holding her hand, in their RV, their service dog nearby, a week before they were supposed to close on their first home together.
Hours after his death, Nicole got a call from former Navy SEAL and author Jason Redman, who asked, on behalf of the Concussion Legacy Foundation (CLF), if she would donate her husband’s brain. “I said, ‘Absolutely. We need to get his brain in.’
“The (CLF) is working to raise awareness that you can pledge to donate your brain separately through projectenlist.org. They don’t just need veterans’ brains. They don’t just need athletes’ brains, because in science you need a baseline. They need anybody’s brain. I have pledged to donate my brain to science when I die. You have to tell your family and your loved ones. Ultimately, the next of kin are the ones who have to make that decision ... I do know that they do not collect early.”
The CLF was co-founded in 2007 by Chris Nowinski, who played football in high school and four years at Harvard as a defensive tackle before he entered the WWE arena as “Chris Harvard,” a chiseled 270-pound, 6-foot-5 competitor who typically wore an H letter jacket as part of his shtick. Three years of training, heavy travel and regular blows to the head ended his career on the circuit a few weeks after a kick from “Bubba Ray Dudley” put him on his back in Hartford, Conn. “Something was wrong with my vision,” he later wrote of that moment. “I didn’t know where I was, what was happening around me, or why I was staring up at fuzzy-looking lights on the distant ceiling of a gigantic arena – I only knew that something was terribly wrong.”
He wrestled a few more times following that, battling painfully through whatever was suddenly wrong with his head, until it was obvious he could not continue. At that point, he set his rewired mind to a better understanding of concussions and their effects. His 2006 book “Head Games” is now in its third edition and was the subject of a documentary that explored the effects of concussions among football players, which made headlines in The New York Times, led to congressional hearings and influenced changes in the game.
“I was fearless,” says Nowinski, who now has a Ph.D. in behavioral neuroscience. “When I give lectures on neuroscience, I show how crazy I was with my own brain. I let people hit me in the head with chairs and objects. The head butt was my move in football. I have two bad shoulders, so I hit you with my head. I did things that I regret.”
He regrets them now but had no idea at the time that multiple blows to the head had probably damaged his tau – a protein that holds certain brain cells together so they can deliver messages that affect executive functions, mood, vision, sleep and other operations among a mind-boggling list of tau-assisted responsibilities. He had no idea then, nor is he sure now, that he was confronting the degenerative brain disease chronic traumatic encephalopathy (CTE), which cannot yet be detected among the living. Its presence can only be confirmed through laboratory examination of a sufferer’s brain tissue.
Identification of CTE before death is one goal of the Concussion Legacy Foundation and pioneering neuropathologist Ann McKee of VA and Boston University, who runs the VA-BU-CLF Brain Bank at the Jamaica Plain campus of the VA Boston Healthcare System. The bank opened 25 years ago as a two-person lab at the Edith Nourse Rogers Memorial Veterans Hospital – the Bedford, Mass., VA medical center – and studied donated brains to seek answers about such conditions as Alzheimer’s disease and dementia.
Over the past decade, largely due to Nowinski’s persistence, the brain bank has evolved, grown and captured national attention. The brains of former National Football League (NFL) players who suffered severe and often deadly effects of post-concussive syndrome following their careers have been examined, one after another, by McKee and her team. The program has grown to four neuropathologists, four technicians and 20 other staff members, supported by VA. They now have more than 1,100 donated brains in the bank, which are studied for multiple conditions.
In most cases, especially early, the growing number of football player brains came after Nowinski cold-called families to make the uneasy ask. As NFL families agreed to have their loved ones’ brains studied, evidence mounted. Four of the first four had CTE. Now, out of 111 former NFL players’ brains studied by McKee, CTE has been identified in 110. Among them was the high-profile case of former New England Patriots star tight end Aaron Hernandez, who in 2017 died by suicide in a jail cell at 27 following a highly publicized murder conviction and a string of irrational acts. “I was stunned that Aaron Hernandez had so much disease,” McKee said. “For some reason, you think it’s not going to happen. And then it does.”
Traumatic brain injury and post-traumatic stress disorder have been called the “signature wounds” among post-9/11 veterans. Blasts from improvised explosive devices, crashes, falls and other blows to the head have come with the territory of training and fighting in Iraq and Afghanistan. Ron Condrey did not have any one major head injury, his wife explains, but he sustained multiple concussive events over the years, perhaps 20 in all.
“He had a motorcycle accident during his Navy training,” Nicole says. “I think that was the start to a lot of things. After that, he fell down a mountain in Afghanistan on some mission. He had a Humvee roll over. He had a helicopter crash. As an EOD (explosive ordnance disposal) tech, you’re around explosives. Repeatedly, over and over throughout his career. Big ones. Small ones. You have one (concussion) and then the next one compounds itself, and then the next one and the next one. Individually, he might have been OK had he only had one.”
A Notre Dame-educated electrical engineer, Nicole had been a civilian IED countermeasures analyst for the U.S. Army in Afghanistan. Ron, who had been committed to the Navy since 17, was a beloved combat leader and highly trained paratrooper. Their paths never crossed in theater, but they found each other in 2013 when she was trying to get her initial skydiving license in Suffolk, Va. He was an experienced trainer, and they soon discovered they had more than jumping out of airplanes as a common interest. “We both kind of dealt with IEDs in different ways, but we never met each other until later. When we did, we had a lot of similar connections.”
Ron had been jumping for more than 15 years, and pushed Nicole to keep training and working to become a master skydiver. “I was his apprentice, you might say,” she says.
They loved extreme outdoor recreation, and each other. By the time they married July 30, 2015, however, Ron had already shown signs of brain injury, including a suicide attempt earlier that year. “It was a pretty bad one. His buddies came and said, ‘Hey, we need to get him help.’ I’d been trying to get them to understand for a while that there was something going on with his brain. It took a suicide attempt. He was still in the Navy at the time. They said, ‘Yeah, we should intervene.’”
He enrolled in DoD treatment programs in Portsmouth, Va., and Bethesda, Md. Nicole accompanied him to appointments in the early months of their marriage. Soon, it was clear he needed to get out of the Navy, perhaps with a medical discharge, but he had enough years to retire in May 2017.
By that time, she explained, his condition was plummeting. “It was like a roller coaster. I’m sure anyone who has been a caregiver, or a spouse or a loved one – someone going through this – could tell you the same story. One day, he could be doing really great and the next day just in the dumps. Or one hour doing great and the next hour not.”
That’s when they were given Via, a trained service dog. “Ron really liked a lot of the Latin words that are used in the military,” Nicole says of her name. “Via directly translates to ‘road’ or ‘street.’ But it can also have the meaning of journey or path. So we picked that name because she was an important part of Ron’s journey.”
Initially diagnosed with major depressive disorder, “which stems directly from the traumatic brain injuries and the post-traumatic stress,” she explains, Ron’s condition was later characterized by VA as PTSD with some TBI, and he was given a 100 percent disability rating. “Lots of different meds,” she recalls. “And the meds make you gain weight. For a warrior to gain weight, it’s a sign of weakness. He felt even worse, and his view of himself went down the tube even more.”
She says he tried prolonged exposure treatment, but that wasn’t effective because Ron had no single triggering event. “The idea is that there is an event that is really haunting you or bothering you on a regular basis. For Ron, he was a warrior. He expected to see everything he saw. There wasn’t one event. But they really wanted to help him with his post-traumatic stress. Prolonged exposure was the key, or so they said. He got worse. There wasn’t an event for Ron. There were events, but they happened to his brain, concussively, not his psychological state.”
By that time, Nowinski, McKee and the VA-BU-CLF Brain Bank were advancing scientific understanding of the links between concussions and psychological behavior. More and more brains were coming in, particularly from former athletes, and a growing number from veterans who had been diagnosed with TBI and PTSD, which are studied together and separately for the presence, or not, of CTE.
“Traumatic brain injury can be an acute injury – a blow to the head, a subdural or epidural (bleed) – and it can be a major injury with loss of consciousness, amnesia, neurological deficits,” McKee says. “Or it can be a mild injury. There are all types of severities – mild, moderate and severe. Mild TBI is what I am primarily concerned with. You don’t see a bruise. There is no blood on their scalp or anything. It’s a subtle injury, but it can have long-term consequences. What we know from our research now is that if you sustain these mild TBIs – enough of them over a long period of time – it dramatically increases your risk for ... CTE. It’s like the brain gradually breaks down, bit by bit.
“A TBI is like a car accident. A car accident can be a big accident. It can be a small accident. A mild TBI, or a concussion, is more like you’ve got a car on a really bumpy road, and you just keep driving on it, and your car slowly breaks down. It’s a long-term consequence – subtle damage that occurs over years.
“PTSD is a complex set of symptoms. They can be sleep difficulties, anxiety, all sorts of things. And it is usually related to trauma. The trauma doesn’t have to be physical. It doesn’t have to be a TBI. It can be psychological trauma. It can be sexual trauma. What we have found is that individuals exposed to trauma – psychological or even physical trauma – develop PTSD, which is this well-defined but complex set of symptoms. So, how does this fit in with TBI and CTE? How can you compartmentalize those? It’s not easy, and we are still working on it. There are people with PTSD and no trauma, PTSD and no CTE, and we also know – because we have a big brain bank here for PTSD – that some of those cases have CTE.”
“For them to stamp PTSD on his medical record, it was all they knew how to diagnose,” Nicole says of her husband’s situation. “The problem is, how do you really diagnose it? The symptoms are so similar.”
One therapy that seemed to work was skydiving. “It was something physical he could repeatedly do,” Nicole says. “In theory, it was supposed to help his brain recover and heal.”
Moreover, she adds, “He was really good at skydiving. He loved it, and he loved giving back.” He had more than 5,000 recorded jumps over his career. He’d also been booked to do demonstration jumps at various venues, including Soldier Field in Chicago – 10 of which he did with Via. “She doesn’t like the plane much,” Nicole says of their skydiving service dog. “But the second she gets out of the plane, it’s like any dog putting its head out the car window.”
The stars were thus aligned for the Condreys to pack up and move to Middletown, home of Team Fastrax, which teaches skydiving, performs demonstration jumps at big events – typically involving huge U.S. flags – and competes against other skydiving teams around the world. It was something they could do together, especially after they saw the team’s annual Warrior Weekend to Remember event where Gold Star Families and disabled veterans gather for a weekend of skydiving and camaraderie.
“If you’re a combat-disabled veteran, you jump for free,” Nicole says. “We were in it to inspire people and be a part of the community, and get people to get outside their comfort zones and do great things.”
Ron’s condition, however, worsened as his neurons continued to misfire. “Ron was in a really bad state the last six months. He actually got to the point where he stopped jumping. He didn’t enjoy anything about it anymore. And this is something you see in people who can be depressed. They don’t enjoy the things they loved to do before. He was a recluse. He didn’t go out at all. He would push everyone away, including me and his service dog ... and we were keeping him alive at the time.”
In late August 2018, he checked into a private-sector retreat for veterans. He came home with a sudden appreciation for everything around him. “He was a totally different man. I was euphoric, but I had this feeling in my gut that I couldn’t pinpoint.”
A few days later, the euphoria was gone. The roller coaster descended, fast. As for the retreat, “I think Ron got there too late. He had gotten so far into that hole without getting back up, it just took one more bad place, one more bad moment, for him to not see his way out of it. His brain wasn’t thinking logically at that time.”
It was about 4 in the afternoon when he pulled the trigger. “I can’t tell you why that day,” she says. She called 911 and then the Team Fastrax hangar. “They were here for me. I have an extended family that has been through a lot with me.”
The decision to donate his brain to the bank came without hesitation. “Ron wanted to give back to veterans in every way he could, so it was just a clear fit, something that could last.”
“It’s terrible to lose these guys,” Nowinski says. “If we can do anything to stem the tide ... so many people are committed to suicide-prevention campaigns, but it still happens. We need to understand how we can do more to help.
“We have learned more about our brains in the last decade than we have in all of human history,” he adds. “The brain is the last great frontier. It’s so complex. We are only beginning to understand its complexity. So sometimes the only way to really appreciate it, since it’s hidden inside of our skull, is to actually look at it under a microscope after somebody has passed away. What’s been amazing, doing this work for a decade now with the most amazing researchers in the world at VA and Boston University, is that we make breakthroughs every year, because this work hasn’t been done before.”
New rules about helmet-to-helmet hits, player suspensions for multiple such penalties, warning posters in locker rooms, research and development of safer helmets, and regulations about returning players to the field after concussions are among the steps football has taken since the CLF was established. “Football is dramatically safer today than when I played it,” Nowinski says. “We are not doing all the stupid things we did back then. (But) the reality is, we are still creating CTE in people’s brains.” He says raising the age limit for tackle football can help by reducing the number of years a player is exposed to repeated blows to the head.
“Football is not the problem,” he says. “It’s too much football. I think the future of football is non-tackle versions until high school.” Adult athletes – as with firefighters, police officers and military personnel who risk head injury but understand the risks, Nowinski says – are different from children who often start cracking heads with one another on the gridiron as young as 5.
The route between head injuries and CTE is different for military personnel, McKee says, but they commonly lead to the same destination. “What I can say about military veterans who have been exposed to either blast or concussive trauma is that it’s not as predictable as football. Football tends to be a relatively stereotyped exposure. They tend to do relatively the same things every time they go out and play. But a military person, a veteran – it’s pretty random. Are they in combat? Are they not? Where are they in combat? What are their exposures? Were they driving down the road where there was a blast? Where were they standing or where were they sitting in relationship to the exposure? There are so many variables. It’s much more complex.”
Scanning and imaging technology can only go so far to detect and understand brain disease, McKee says. More is learned by cutting into brains and carefully studying their conditions after death.
“I could never have seen (CTE) using an imaging technique. You can only find, in imaging, what you are looking for. You have to know what you are looking for, target it and find it. There is exploration and discovery in neuropathology that is not possible with neuroimaging.”
The research, Nicole says, can provide guidance for the military before assignments that may include exposure to head trauma. “Right now, the military is not doing neuro-psych evals on entry for EOD techs,” she says. “We have to have a baseline ... when they first get into the military, into sports, whatever it might be. All of our brains are different. Then, throughout someone’s career, if they have had an injury to the brain, they need to be tested again. Regularly. If we were able to do it regularly, we could stop it earlier. Ultimately, the goal is keeping people from getting long-lasting TBI symptoms. The research and the data are extremely important, the end goal being that we don’t get people in that state.”
Nowinski adds, “If we change how we play sports and how we conduct military training, we can create better outcomes.”
Treatment of CTE’s effects depends on seeing it in the first place, McKee says. “The basic cornerstone of treatment is detection ... during life. If we can do that – if we have a biomarker, something in the blood or saliva or spinal fluid, or if we have an imaging technique that can pick up CTE – then we can treat it. We would have lots of ideas how to treat it. We have anti-tau therapeutics. There are anti-inflammatory therapeutics. There’s a gamut of possibilities.”
To get there, it’s going to take donated brains, she says. “It’s very important to have the brains. That informs us how to do the detection.”
“I think (the brain) is more powerful than we have any idea about,” Nicole explains. “It’s also susceptible. It’s fragile. We can do great things with our brains, but if we don’t protect it, if we have a concussive incident, we need to be sure to take a timeout and step away from that activity before we go back into it again.
“If we do something else again right away and get another concussion, our brain is going to have a much harder time healing. Learning more about our brains and what can happen to them is extremely important, so we can be those fully functioning warriors.”
“We are now honestly addressing the issue,” Nowinski says. “We have a tremendous opportunity to prevent this problem going forward by changing what we’re doing. But also, there are generations of people dealing with this disease, whether they are athletes or veterans, and we don’t have an answer for them. We need to invest in research so we can create better answers.”
To that end, Nicole says she is driven to help CLF make the uneasy ask. “I am taking Ron’s spirit with me in all of this,” she says. “I would call it a passion because I loved him so much.”
Adding military, veteran and control brains to the bank will “help us solve this problem,” Nowinski says. “Go to projectenlist.org and sign up to pledge your brain. Follow the instructions. Hopefully, we won’t get your brain for a very long time, but you will be part of an important mission going forward to cure this.”
There is no cost, he adds, and every family gets a full report of the findings. “We treat every family like our own.
“I now look back and realize I was very lucky to get kicked in the head by Bubba Ray Dudley in that wrestling match in 2003. It has allowed me to do work that I am passionate about. And this work is helping people.”
Jeff Stoffer is editor of The American Legion Magazine.