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HL20: Chris Nowinski—Collecting Brains, Combating Concussions

 |  By Margaret@example.com  
   December 13, 2011

In our annual HealthLeaders 20, we profile individuals who are changing healthcare for the better. Some are longtime industry fixtures; others would clearly be considered outsiders. Some are revered; others would not win many popularity contests. All of them are playing a crucial role in making the healthcare industry better. This is the story of Chris Nowinski.

This profile was published in the December, 2011 issue of HealthLeaders magazine.

 "I hope to reform football, ice hockey, soccer, and lacrosse by the time I have a child old enough to play."

Chris Nowinski collects brains—specifically, the brains of deceased athletes.

Nowinski is the president, CEO, and cofounder of the Sports Legacy Institute, a Boston-based nonprofit that works to raise awareness about concussions and their long-term effects on athletes.

His interest stems from personal experience. As a Harvard football player and then a professional wrestler with World Wrestling Entertainment, Nowinski says he's had six concussions. Make that six concussions he can remember.

"I started playing contact sports when I was six years old. Based on the data, I'm sure that I had more bell ringers and dings but I just can't remember them. There were times when I hit my head, but I was one of those unlucky guys—I never lost consciousness long enough for anyone to notice."

His wrestling career ended in 2003 when he caught a boot to the chin during a routine tag-team match. He says he struggled with that particular concussion for several years, visiting doctor after doctor in search of relief. Those were dark days, he says. "They were pure misery."

Nowinski credits Robert Cantu, MD—the eighth doctor he saw for his concussion problems—with his turnaround. Cantu, who is known as the "godfather of sports concussions," explained to Nowinski that athletes don't need to play through concussions, but instead need to rest their concussions. And for the first time he learned that many of his health problems were among the long-term consequences of multiple concussions.

The 33-year-old says he still struggles with some of the effects of multiple concussions. "I can't exercise at 100% without getting a headache. I take medication for my headaches that also enhances my cognition. I'm still highly functional but I'm definitely different," Nowinski says. He doesn't have any trouble reading or driving, but concentrating can be a problem when he doesn't take his medication.

Nowinski spent hours in the Harvard library reading about concussions. His research led him to conclude that athletes were "all just being lied to about the consequences of playing some sports."

He realized he had been "recklessly hitting my head for 19 years" without ever hearing about concussions. "No one talked to the athletes about [concussions], so we never said anything when we were dizzy or seeing double."

His research led him to write Head Games: Football's Concussion Crisis to educate parents, coaches, medical professionals, and others about the long-term effects of brain trauma.

He realized that people needed physical evidence to change their minds and started actively pursuing brains for study. He began calling families of deceased athletes asking for brain donations for research.

His first brain—or rather brain tissue—came from Andre Waters, a former NFL defensive back who committed suicide in 2006. Examination of Waters' brain tissue produced evidence that the 44-year-old suffered from chronic traumatic encephalopathy or CTE, which is a progressive degenerative disease related to repetitive brain trauma.

Nowinski's campaign to publicize those results is credited with driving the national discussion about the effect of repetitive brain trauma on athletes.

With Cantu, Nowinski founded the Sports Legacy Institute, which is now affiliated with Boston University School of Medicine. In 2008 SLI and BU created The Center for the Study of Traumatic Encephalopathy to conduct state-of-the art medical research on CTE. The center maintains a brain bank of more 90 donated brains. Nowinski is codirector of the center and serves as its chief brain recruiter.

While Nowinski still makes the difficult call to families asking for brain donations, his work is becoming so well known that families of deceased athletes often initiate the contact. He says he's amazed at how brain donations are becoming an accepted part of sports. "People tell me that they were expecting my call and that the player discussed wanting to make a brain donation." Several hundred athletes have already agreed to donate their brains to CSTE when they die.

One of CSTE's best known cases involves the brain of former NFL player Dave Duerson. The 50-year-old committed suicide in February 2011. He left a note and text message directing his family to donate his brain for research. He was diagnosed with a moderately advanced case of CTE overall but the pathology was severe in areas of the brain that influence impulse control, inhibition, emotion, and memory.

Deaths like Waters' and Duerson's used to be attributed to emotional problems, notes Nowinski. "Every athlete that lost their mind just missed their sport. Now we're discovering that they have degenerative brain disease."

Much of Nowinski's time is spent trying to make sure young athletes don't end up like Waters  or Duerson. He travels about 100 days each year speaking to communities, colleges, high schools, and even elementary schools. He tells his personal story and leads SLI's Advanced Concussion Training program to help coaches, players, and parents recognize symptoms and provide the correct treatment for concussions.

He says protecting young players is his motivation "Adults need to understand the risk of the sports we are signing up [youngsters] to play. They need to see how trauma has destroyed the lives of so many athletes. I am willing to travel around and to try to make sure it doesn't happen to the next generation. You always have to remember that these are just children who are playing a sport meant to develop them as human beings. Wins and losses truly do not matter."

Repetition is the biggest issue in brain trauma. Nowinski explains that research now says that every hit to the head counts and is potentially destructive. He cited statistics for a high school football player in Illinois, who wore a helmet with sensors and took more than 2,200 hits to the head in a single season.

He said football and soccer have the highest number of hits repetitions. "In football 75% of the hits come in practice so now there's a big bulls-eye on practice and radically changing it."

Nowinski limits his own sports playing to basketball. When he has a family he wants his children to play sports, but "we'll have to talk about contact sports. I hope to reform football, ice hockey, soccer, and lacrosse by the time I have a child old enough to play."


This article appears in the December 2011 issue of HealthLeaders magazine.

Margaret Dick Tocknell is a reporter/editor with HealthLeaders Media.
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