Families of Junior Seau, others affected by CTE push for disease awareness, brain donation in Houston
There is generally no shortage of news conferences and events at the media center during Super Bowl week.
On Monday, there was one set for a first-time event: National CTE Awareness Day, spearheaded by family members of men whose lives were affected by chronic traumatic encephalopathy, the degenerative brain disease found to afflict a high number of former NFL players.
One of the women involved in the event is Mary Seau, sister of the late Hall of Fame linebacker Junior Seau. After his suicide in 2012, Seau’s family had his brain investigated and he was found to have CTE. That led Mary on a quest for answers about the disease, which led her to start a foundation to promote CTE awareness, which included her giving talks in the family’s hometown of San Diego.
All of that led her to other families who had dealt with just what she was dealing with: the loss of a loved one who struggled with the symptoms of CTE – headaches, confusion, depression, memory loss, etc. – before their deaths.
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Some of those family members formed Faces of CTE, an initiative aimed at raising awareness and understanding, facilitating scientific progress and providing a support system for families who had loved ones affected by CTE.
“Junior is telling me that I need to speak for him,” Mary Seau told Vice Sports. “We want to let people know to take care of their brains. That the brain is the most important part of the body.”
Faces of CTE, which is spearheaded by two women, Kimberly Archie and Debbie Pyka, who both had sons diagnosed with the disease, promoted National CTE Awareness Day at a Monday press conference in Houston, and will also have a book featuring first-person accounts from family members of CTE victims, a program to promote the playing of flag football for children under 14, and a partnership with the Mayo Clinic Brain Bank to encourage and facilitate brain donations, particularly from youth athletes and amateur athletes.
“What better place and time to do this than [in Houston] before the Super Bowl?” Archie said of the timing and location of the group’s event. “It’s a good reminder of the ultimate price of doing the business of playing football. This is a public health crisis, and [the NFL] shouldn’t forget it.”
On Sunday night, Mary Seau and other families gathered for dinner; Mary said the dinner was “therapeutic,” noting that one of Faces of CTE’s goals is to provide a way for affected families to connect and share their emotional journeys.
Mary, who saw first-hand what football did for her brother but also, ultimately, what it robbed him of, believes that talking to football fans and the families of football players is a necessary part of CTE awareness.
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“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,” Seau 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.”
Archie, a child sport safety advocate, said it’s important to realize that it isn’t just famous football players, like Junior Seau, who deal with CTE.
“Kids die of suicide, drug overdoses, reckless behavior, and parents don’t realize that CTE could be involved,” Archie said. “So we want to help the science along, be part of the solution instead of sitting around being frustrated. We’re tired of hearing that [the disease] is rare when it has rarely been looked for.”
