Nick Cammarata had a booming laugh and an uncanny ability to spin out a story that kept people hooked, even as it went on…and on. But for Hayley Cammarata, it’s impossible to remember her older brother without thinking about hockey.
Nick excelled in youth programs in their hometown of Canton, Mass., tearing up the ice through middle and high school. He played Division I hockey at Merrimack College from 1999–2003, where he skated in 127 games, then played professionally for four years in the minor leagues—including a stint in Italy. Even after retirement, his life revolved around hockey: He coached junior teams in Utah, Texas, South Dakota, and New Hampshire.
“He loved hockey. He was this insanely talented athlete and hockey was the sport he fell in love with. He started playing when he was three years old, and he was amazing from that moment until he died,” says Cammarata. Nick died unexpectedly in June at age 44.
For all Nick’s beautiful qualities, there was another side to him—one that was more complex, more challenging, and seemingly only getting more so as time went on.
Hockey is a full contact sport, and after years of enduring hard hits, Nick worried that something was wrong—something in his brain. “He wanted to be involved in a CTE study if something should ever happen to him—and then, of course, something did happen,” Cammarata says, still sorting through the fog of grief.
Nick Cammarata had an illustrious hockey career, but told his sister Hayley that he wanted to be involved in a CTE study “if something should ever happen,” she says. Photo courtesy of Hayley Cammarata
After Nick died, the medical examiner connected Cammarata’s family with Sophia Nosek, research program manager and brain donation coordinator at Boston University’s Chronic Traumatic Encephalopathy (CTE) Center. Since its founding more than 15 years ago, the center has risen to be the world’s foremost seat of research into CTE, a neurodegenerative disease that is caused by repeated head trauma and can only be diagnosed after death—for now, at least. BU researchers have contributed immensely to the understanding of CTE—which has been tied to an array of symptoms, including memory loss, aggression, and anxiety—and helped countless families make sense of sometimes drastic cognitive and personality changes in their loved ones.
Nosek talked the Cammaratas through the donation process, asking a few preliminary questions about Nick’s life, and sending over consent forms. The medical examiner’s office handled the donation, and Nosek ensured it arrived in the lab in Boston. She let the family know Nick’s donation was safe, in hand.
Whatever comes, Cammarata says it’ll be a way to understand her brother a bit better.
And, she says, “If we can help find information for families in the future, it would be an honor for his legacy and for us as a family, to help future kids and families learn about this.”
The Power of a Phone Call
For Nosek, the phone call from Cammarata’s family was the first in a chain of toppling dominoes, where the end result is not just a diagnosis for one person, but also a growing body of research on a host of little-understood neurodegenerative diseases.
Sophia Nosek is a research program manager and brain donation coordinator at the CTE Center. Photo by Jake Belcher
Once her phone rings, Nosek (CAMED’25) has just 72 hours from the donor’s time of death to coordinate the extraction of their brain, ensure it’s stable for travel and for the ensuing research, and organize its journey to Boston. It’s tight.
“I do feel like it’s one of the most important things I’ve ever done, because I need to speak to the families at some of the worst moments of their lives and make sure they feel comforted, as well as secure and confident in letting me handle something that’s really important to them and something that was really important to their loved one,” Nosek says.
Once it gets to the lab, that brain will join more than 1,500 others that, together, are helping to advance critically important scientific inquiry.
McKee and her team have found CTE in nearly 92 percent of the ex-NFL players they’ve studied. Photo by Cydney Scott
Ann McKee, who directs the CTE Center and is a William Fairfield Warren Distinguished Professor at BU, describes her team as world experts in CTE. It’s not an exaggeration.
The CTE Center is how we know that NFL star Aaron Hernandez, who was convicted of murder in 2015, had one of the most advanced cases of the disease ever found in someone so young. It’s how we know that NHL team captain Greg Johnson had CTE. Roughly 70 percent of the brains studied by researchers at the center show evidence of CTE: scientists at BU have discovered it in young athletes who were just 17 years old when they died, and in older retired athletes, who were well into their 80s. Researchers have found it in nearly 92 percent of the ex-NFL players they’ve studied.
But it’s not just plaguing football and ice hockey: Rugby and soccer players have had CTE, along with rodeo and BMX riders. Boxers and wrestlers have had it, as well as military veterans. It’s been found in people with poorly controlled epilepsy and those who were victims of domestic violence. CTE can develop in anyone who experiences repeated hits to the head.
Researchers at the CTE Center have published more than 100 studies on CTE and traumatic brain injury—work that would’ve been impossible without the many donated brains. They’ve found that playing tackle football increases the chances of a Parkinson’s disease or amyotrophic lateral sclerosis (ALS) diagnosis, and that cumulative hits to the head can lead to a number of long-term consequences, including loss of white matter in the brain. Researchers at the center have also been key in figuring out the pathology of CTE—what it looks like in the brain and how the disease evolves over time. And all of these studies, researchers hope, will bring them closer to the holy grail of CTE research: being able to diagnose it in life, not just after death.
“Getting His Bell Rung”
Virginia Grimsley was folding laundry one afternoon at her home in Houston, Tex., when her ears perked up. It was the mid-2000s, and HBO’s investigative sports program, “Real Sports with Bryant Gumbel,” was airing an episode about the little-known long-term effects of repeated concussions on professional football players.
John Grimsley’s whole family loved watching him play, including his two sons. Now, his widow Virginia vows that her grandsons will never play tackle football. Photo courtesy of Virginia Grimsley
Grimsley turned the volume up. Her husband, John, had been a linebacker with the Houston Oilers (now known as the Tennessee Titans) and played in the NFL from 1984 to 1993. Football was known for its physical injuries, of course—torn ligaments, broken bones, and the like—but this was the first time Grimsley had heard anything about possible cognitive issues. Home alone, she watched the entire program front to back. Things started clicking into place.
High school sweethearts, Virginia knew that John had played football since he was eight years old. He would talk about “getting his bell rung” during particularly hard tackles, joking that afterward, he’d “aim for the guy in the middle” of his blurred vision. Players would inhale smelling salts, then get back on the field. The show, as it were, went on.
At one point after his retirement, Virginia asked John how many concussions he’d had throughout his career. He said he remembered three distinctly, but guessed it was closer to one a year during his professional career. Nine years. Nine concussions.
Thanks to research by scientists at the CTE Center, we now know that it’s not the number of concussions, but the number of hits to the head that causes CTE. John’s nine years in the NFL was enough of a proxy to raise concern.
And, for Grimsley at the time, it was clear that John had been acting differently lately. The once even-keeled, gentle man was suddenly quick to anger. He’d raise his voice, get frustrated easily. Plus, he’d been forgetting things. He needed directions to a friend’s house not five minutes away—a route he’d driven countless times.
John and Virginia Grimsley celebrate Christmas in what has become one of Virginia’s favorite photos, she says. John, a former linebacker with the Houston Oilers, was among the first football players to be diagnosed with CTE at BU’s CTE Center. Photo courtesy of Virginia Grimsley
“You notice these things, but don’t always know what it means,” Grimsley says now.
One weekend when she and the couple’s boys were away, tragedy struck. John, a lifelong outdoorsman, was cleaning his rifle—a meditative activity he’d do when no one else was in the house, and one he’d done hundreds of times before.
“Now, knowing everything that was going on in his head, he obviously forgot that you always check the chamber, to make sure the gun’s unloaded before cleaning it,” Grimsley says. “So that’s what happened. That’s how he died. It was an accident.” He was 45.
In the haze of those fitful days after John’s death—a tangle of urgent decisions no one ever wants to make—one decision now stands out to Grimsley as divine intervention, “a God thing,” she says: donating John’s brain to BU’s emerging CTE Center.
Emotional, Sensitive Work
In 2008, Ann McKee was studying professional boxers as part of her research at BU’s medical school. A neurologist and neuropathologist, she was more specifically looking into the deterioration she was finding in their brains—these athletes who had suffered one punch after another to the head during their careers. Under the microscope, their brain tissue was filled with an abnormal protein, called tau, that grew like so many weeds in a garden, tangling and strangling the healthy brain cells. What she found was more commonly known as “punch-drunk syndrome” at the time.
Pathologists at the CTE Center slice thin slivers from preserved brain tissue and use antibody staining to draw out details at a cellular level. Photo by Cydney Scott
Then, a new donation came to her lab. In this brain, from John Grimsley, McKee found the same pattern of pathology she’d been finding in the brains of boxers. It was a stunning discovery, among the earliest anyone had made that found evidence of CTE in a former football player. John Grimsley became the fifth former NFL player to be diagnosed with the disease. And McKee pinpointed that abnormal, misfolded tau—in a very specific pattern and distribution in the brain—as a key indicator of CTE.
Tom McHale played football at Cornell University before joining the Tampa Bay Buccaneers as an offensive lineman. Photo courtesy of Lisa McHale
A year later, researchers at BU announced that they had diagnosed two more former NFL players, including former Tampa Bay Buccaneers offensive lineman Tom McHale, who was 45 when he died.
“We were college sweethearts,” says Lisa McHale, Tom’s widow. When they overlapped at Cornell, she helped manage the football team on which he played. Tom moved to Tampa to join the pros for the 1987 season, and Lisa followed a few years after. They got married in 2000.
McHale says that though her husband did show some signs of depression as he got older, she never knew him to have had a concussion; a few hard knocks, sure, but that comes with the territory. So when a researcher at the CTE Center called to ask about Tom’s brain shortly after his unexpected death, she assumed they needed a control sample.
“We know now that you don’t necessarily need to suffer a concussion to develop CTE,” McHale says. “The bottom line is Tom started playing football at 8 and played a total of 26 years. That’s a long, long, long exposure.”
Lisa and Tom McHale were college sweethearts. After Tom’s postmortem CTE diagnosis, McHale joined the CTE Center. She’s now the director of legacy family relations. Photo courtesy of Lisa McHale
McHale joined the center two years after her husband’s diagnosis, pledging to help other people in her shoes. She’s now the center’s director of legacy family relations.
“It’s an emotional and very sensitive kind of work. My conversations, the bulk of them occur with families who have suffered a very, very recent loss, many of them very tragically. And so it’s a constant reminder of the implications of this disease and a constant reminder of my own loss.”
