On Monday afternoon, a group of mothers and other family members of men who have died with chronic traumatic encephalopathy gathered in a room at a hotel in Houston to hold a press conference announcing CTE Awareness Day and promoting their group’s eponymous website, Faces of CTE.
They brought life-sized cardboard cutouts of their family members or other notable people who have been found to have CTE, like Dave Duerson, the former Chicago Bears safety. They talked about their main project, a collaboration with the Mayo Clinic which would aid CTE research by coordinating with families to send the brains of the recently deceased to Mayo. They had Larry Mallory, who played for the New York Giants from 1976-1978, speak at the event about an initiative he leads to foster and promote flag football for players below the age of 14.
In front of them were a total of three media members.
The low attendance didn’t bother the women who organized the event, they said. Instead, it was a pilgrimage of pride. Through the grief they shared over their dead sons, they had shown up and stood up in the Super Bowl’s backyard.
Faces of CTE is headed by Kim Archie and Debbie Pyka, women whose young sons were found to have CTE pathology after they died, and primarily aims to share their stories of loss and provide a support group for parents and families in the same position. Through the community they’re building, the group advocates for concrete action: They want the brains of people who played contact sports to be given to researchers, and they want players below 14 to play flag football.
Archie’s son, Paul Bright, was only 24 years old when he died on September 1, 2014 in Los Angeles after being hit by a car while he was riding his motorcycle at a high speed. Archie had been an advocate for increased safety regulations for youth sports—particularly cheerleading—for years before her son’s death, and sent her son’s brain to be examined by Dr. Ann McKee, at the industry-leading Boston University CTE Center. Though Bright had only played football as a child, and the only until the ninth grade, McKee returned a diagnosis of Stage 1 CTE in his brain. By that time, Archie knew that CTE was marked by impulsive, reckless behavior, along with other signs of mental deterioration, which she connects to her son’s purchasing of and reckless driving of his motorcycle.
Two years earlier, and halfway across the country in Wisconsin, Debbie Pyka had buried her son, Joseph Chernach, after he’d hung himself in her backyard tool shed. Like Bright’s, Chernach’s brain was examined by McKee, who found somewhere between Stage 2 and Stage 3 CTE in his 25-year-old brain. Chernach played football from fifth grade until his graduation from high school, but never at the collegiate or professional levels. He came from a family of die-hard Green Bay Packers fans; his brothers Tyler and Seth still root for their team while mourning their brother.
Archie and Pyka met online in late 2014, after both mothers decided to turn their pain into passion and try to raise awareness about contact sports, brain injury, and CTE. (Archie first learned of Pyka and her son Joseph after I wrote about them in 2014.)
Eventually, Pyka and Archie would each go on to sue Pop Warner. Pyka sued for wrongful death, and settled the suit in March 2016; Archie filed a class-action lawsuit in September 2016 with Jo Cornell, whose son also played football and was found to have CTE. Pop Warner was also sued by Donnovan Hill, who was paralyzed at age 13 after going into a block with his head down. His lawsuit was settled in January 2016; Hill died five months later at age 18.
Archie and Pyka are notable members of what I call, with their permission, “CTE Twitter.” In their circle, information, research, and support are passed around like currency; cross them or denigrate their cause at your own risk. Through their online community, they naturally began to combine their resources and networks and organize information as a group.
Pyka, Archie, Karen Zegel, and Katherine Snedaker attended Brain Injury Awareness day on Capitol Hill in March 2016, and continued to make contacts with women who’ve also lost family members to brain injury and CTE. Eventually, plans for a book were put into the works. It will be a collection of essays from 16 families, Archie says, and they plan to call it Faces of CTE.
“People have such short attention spans they’re more likely to read a chapter for each family,” she told me earlier this week. “Perhaps people can see their family member’s symptoms in one of ours. Each family has something in common, but we each have something unique to share.”
Soon, they decided to go all-out and head to Houston and announce CTE Awareness Day on January 30.
“I said, Let’s do it at Super Bowl. Let’s go to Houston and whether we get one media person in there or 100 it’s the symbolism of being here and having the nerve to stand up to the NFL,” Archie said.
In total, 13 people were able to make it to Houston, which required a pooling of resources during the price-inflated Super Bowl week.
Among them was Mary Seau, sister of Junior Seau, whose suicide and subsequent diagnosis became a turning point in the public awareness of CTE. After Junior drove off a cliff in 2010, Seau says, she visited her younger brother in the hospital and pushed him to tell her what was going on in his head.
“When I went to visit him at the hospital after the cliff, I said, What’s going on with you, what’s wrong? And he was kind of like this big old man, shrunk like a little child, and I had to put my head in front of his face and say No, really, what’s going on? ”
Junior never gave his sister the answer she sought. Now she is working to raise support for research that could help alleviate some of the pain of CTE before it’s too late.
CTE research is still limited, and the bulk of it falls to Dr. McKee at Boston University. As part of their initiative, Archie and Pyka want to help expand that network, and intend to have Faces of CTE operate as something of a middleman between families who have lost a family member who had CTE symptomatology and researchers.
Mayo stepped into CTE research in 2013, when researcher Kevin Bieniek went through Mayo’s backlog of brains to identify which had been exposed to contact sports. In 66 brains, Bieniek found CTE pathology in 21 of them. In 200 brains that had not been exposed to contact sports, Bieniek found zero cases of CTE pathology. Bieniek published the results of his study in November 2015.
While the subject at hand is by nature serious, Pyka and Archie are comfortable joking about the power of a scorned mother—or, in this case, scorned mothers.
“I think a mother’s bond is something that when it’s broken, and it’s because of the death of your child, you’re gonna do anything you can to help someone who’s in the same situation,” Pyka told me.
She adds that football and CTE have “destroyed the deceased, it’s destroyed our families, and it’s destroyed our lives. You don’t get a second chance with your brain.”
Archie says the plan for Faces of CTE is to “really look at it from a business perspective, and how can we as family members who have powerful stories how can we have strength in numbers? (Which we kinda stole from the Warriors—it’s kinda been our mantra.)
“Each of us are powerful and can facilitate change,” she says. “If we all get together and keep adding and adding we’re like a wave instead of a trickle.”