Asking People to Donate Their Loved One's Brain for Research

The only real way to understand what has happened to a brain after years of trauma is to study it pathologically, because chronic traumatic encephalopathy is not a disease we know how to diagnose in living people yet. It's my job to track down brains for study. That means when any athlete passes away, I hear about it. I'm trying to find a phone number for the family, usually within 48 hours, to try to find a way to ask them to donate the brain like a tissue donation, organ donation, for research. We've been successful 105 times. Half of those are football players. We have military veterans. We have boxers and ice hockey players. Over 35 former NFL players are now in the brain bank. Any ideas that we—Dr. Anne McKee runs a number of tests on them to look for any abnormalities and to make sure we do a clinical pathological correlation to what were they like and then what do we find in their brain, and how can that teach us? When I call families I am asking them for their loved ones brain. It is a very difficult conversation, especially because I'm not the person they want to hear from when they lose their father or lose their huband or lose their children. It is amazing to see it's much easier—not amazing. It's not surprising if somebody is older the family is more likely to do it, but if it's a parent losing a child it's too emotionally volatile that they usually aren't thinking about long-term. The pitch is that we are trying to figure out how to make sports safer for kids. We are trying to understand how we can help the people that we have already damaged so we can find a way to diagnose it and eventually treat it. It's amazing that most families are fully supportive of what we are doing. If we get ahold of them, I would say half of them agree to do it. The trouble is getting ahold of them and actually having that one-on-one conversation because people are protective of them. Oh, they're not going to want to hear from you, but usually they do. Sometimes there's religious reasons or other ones where they say no. We hear so many yeses, and people now call us. I don't even have to call people. Probably 20 or so families have called us from the hospital saying we know about the work, and we've talked about it, and we want to help. The other job I have, partially because at the beginning I was tired of calling widows, is we sign people up in advance. Now we actually have a longitudinal study. A phone call once a year and updating what they're like so we can correlate that to what we find later on. The youngest brain that we've found CTE in was a 17-year-old named Nathan Stiles from Kansas who actually died of second impact syndrome, so had a concussion, actually went to a doctor and was cleared by a doctor, but probably— I think the concern is he was still having problems or maybe even clearance wasn't enough, but he got hit, a soft hit, that caused him to die. His family gave us his brain, and he had signs of this disease already. A few focal little spots in his frontal lobes, but we found that consistently in these younger cases, and it's a pattern that you just don't find in any other disease. You can even see it from a few spots. Understanding the brains of teenagers is key, because you can kind of get insights into what else is changing at the beginning. What's different about these athletes? We recently studied the brain of an 18-year-old named Austin Trenum, and we found he didn't have CTE, but he did have a concussion 36 hours prior and had multifocal axonal injury and did end up committing suicide, and partially because people need to open up their eyes to the fact that these kids, after a concussion, are different people. They are going to behave differently and be emotionally volatile. They are going to make mistakes. Sometimes those mistakes are criminal. Someone just told me about a kid stealing his car after a concussion. But other times they could actually be permanent. That's something we are trying to get people to think about. We need to really monitor these poor kids when they've had a brain injury, because they are going to be doing the wrong thing.

Currently, the effects of repetitive hits to the head can only be studied pathologically. Chris Nowinski and his colleagues are studying the brains of deceased athletes and service members (whose families donated their brains for research) to learn more about the effects of brain trauma and what might be done to prevent it.

See all videos with Christopher Nowinski.

Posted on BrainLine September 20, 2012.

Produced by Victoria Tilney McDonough and Erica Queen, BrainLine, and Dan Edblom.