For Mary Seau, it started with a question from her children. What really happened to Uncle Junior? This was a few years ago, and Mary's brother, former National Football League linebacker Junior Seau, had been diagnosed with the neurodegenerative disease chronic traumatic encephalopathy (CTE) following his suicide in 2012, a death that stunned both the Seaus and the larger football world.
Mary realized she didn't really know the answer. Didn't understand how scientists had linked CTE to concussions and repetitive brain trauma, and to symptoms like dementia and depression. So she began to educate herself, and then started a foundation to spread CTE awareness, and then began to give public talks in the San Diego area to share what she had learned.
Along the way, she discovered that there were other families just like hers, suffering from confusion and heartbreak—families that had lost fathers, brothers, uncles, sons, and husbands to the disease. Like Mary, many of them wanted to make a difference. On Monday, a group of them launched a new initiative, Faces of CTE, that seeks to raise awareness and understanding of the disease, facilitate scientific progress, and give grieving families a way to connect and support each other.
"Junior is telling me that I need to speak for him," Mary said. "We want to let people know to take care of their brains. That the brain is the most important part of the body."
Spearheaded by Kimberly Archie—a child sport safety advocate whose son, Paul Bright Jr., was diagnosed with CTE—and Debbie Pyka, whose son Joseph Chernach also was diagnosed with the disease, the Faces of CTE campaign includes:
* An upcoming book featuring first-person accounts from family members of CTE victims;
* A program to promote flag football for children under age 14, directed by former NFL player Larry Mallory;
* A collaboration with the Mayo Clinic Brain Bank to encourage and facilitate brain donations, especially from amateur and youth sport athletes;
* A first-of-its-kind National CTE Awareness Day on January 30, with an afternoon press conference from Houston, the site of Super Bowl LI.
"What better place and time to do this than [in Houston] before the Super Bowl?" Archie said. "It's a good reminder of the ultimate price of doing the business of playing football. This is a public heath crisis, and [the NFL] shouldn't forget it."
Funded by the participating families—Archie estimated Faces of CTE has cost about $30,000 to get up and running—the campaign has two major goals: educate the public about the risks and symptoms of CTE, and get more brains to Mayo Clinic researchers, so that those same risks and symptoms can be better understood.
Currently, Boston University researchers have the world's largest CTE brain bank and have done much of the work of identifying and characterizing the disease, particularly in former NFL and college football players.
As of late 2016, BU had found CTE—which currently only can be diagnosed posthumously—in the brains of 91 of 95 former NFL players examined; 48 of 58 former college players; and six of 26 former high school players.
Faces of CTE is working with the Mayo Clinic to try to get more brains to more researchers more quickly, hoping that will lead to a better understanding of CTE's severity and prevalence among younger athletes.
Archie said that Marcia Jenkins—a longtime emergency room organ donation coordinator whose son, Mike, was diagnosed with CTE—will be the primary person coordinating with families considering brain donation. The group has a website and 800-number, and promises to cover any costs involved.
"We're here to help any family deal with CTE," Archie said. "We will hold the families' hand through the process, beginning to end.
"Part of the focus here is to get people to understand that it's not just famous football players. Kids die of suicide, drug overdoses, reckless behavior, and parents don't' realize that CTE could be involved. So we want to help the science along, be part of the solution instead of sitting around being frustrated. We're tied of hearing that [the disease] is rare when it has rarely been looked for."
On Sunday evening, Mary Seau and other involved families—including that of Zack Langston, a former college football player who was diagnosed with CTE and featured in a VICE Sports story—met for an emotional dinner in Houston. Mary said the gathering was "therapeutic," and that part of the point of Faces of CTE was to help people connect and share their grief.
As for launching the campaign in the shadow of the Super Bowl, she said that one of the biggest—but most necessary—challenges of CTE advocacy is talking to football fans and families, people who don't necessarily want to hear about the sport's long-term dangers.
"I've had a lot of angry mothers who tell me to stop talking about brain trauma, and coaches who think I'm trying to take their jobs away," she said. "But I'm not trying to do that. I respect people who think it's important for their child to play football. I'm just trying to show them that if there is trauma, here is how you can help your child and your family.
"For me, the sky was blue one morning, and then four hours later the sky went dark. I don't want it to be like that for anyone else."