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What is CTE?
01:55 - Source: CNN

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Mothers want a ban on heading in soccer, tackling in football and rugby, checking in hockey for children under 14

They're lobbying lawmakers, pushing for new federal rules on contact sports for kids

Repeated hits to the head are blamed for degenerative brain disorder CTE

CNN  — 

Karen Zegel and Kimberly Archie belong to a sorority no one wants to join: Their sons had chronic traumatic encephalopathy, or CTE.

The devastating disease ravaged NFL players like San Diego Charger Junior Seau and Dave Duerson of the Chicago Bears. Most recently, it claimed Pro Football Hall of Famer Ken Stabler, who died of cancer in July, but was revealed last month to have suffered from CTE.

But Zegel’s and Archie’s sons never played professional football. They played youth sports.

Researchers believe the degenerative brain disease occurs from repeated hits to the head and can result in Alzheimer’s-like symptoms of memory loss, aggression and possibly suicide. The first diagnosis of CTE in a professional football player came in 2002. This week, for the first time, the NFL acknowledged a link between football and CTE.

Zegel, Archie and nine other families are visiting members of Congress on Wednesday to push for federal regulations on contact sports for children under the age of 14. As Zegel explained, “I don’t want other mothers to have that, what I have to feel everyday. “

They hope to persuade members of Congress to ban heading in soccer, tackling in football and rugby, and checking in hockey for young athletes.

Archie’s son, Paul Bright, played football from the age of 7 to 17 – just 10 years on the gridiron. After he died in a motorcycle accident at the age of 24, an autopsy revealed he had already begun to develop CTE.

“We want to protect our kids,” said Zegel. “We want to keep them in school, keep them in work, let them live to their full potential.”

Living the dream, until it became a nightmare

Zegel is doing whatever she can to protect other children, because she couldn’t protect her son, Patrick Risha. She didn’t know she had to.

Patrick basically grew up in the locker room. He grew up in Pittsburgh Steeler country, in the Monongahela Valley area of Pennsylvania. His dad was a coach. “Friday nights were everything for our family,” said Zegel. It’s what they did.

Patrick started playing around the age of 10. “I didn’t think he was terrific, but ended up learning. He had a great work ethic and he tried, and it worked out,” said Zegel.

Patrick Risha poses with his sister Amanda.

On the field, no one could take Patrick down. It felt like he got on the ball on almost every play, remembers Zegel. In high school, he was nicknamed “the Horse.” His coach told the local paper, “He is going to be the workhorse for us. … I expect him to carry the ball 20-25 times a game.” Patrick Risha’s name found its way into local headlines like “Warriors Ride Risha into the WPIAL Playoffs” or “Risha Runs Over Titans.”

“As a kid, he was bright and gifted. He was a fun kid to raise,” his mom said. But above all, she said, he was loyal. “He would do anything for anybody.”

His dream was to go to an Ivy League school. So despite being accepted at Colgate, he spent a year after high school studying and playing football at Deerfield Academy, a college preparatory boarding school in Massachusetts. He was accepted at Dartmouth the next year.

Patrick Risha played football in high school and college.

He was living his dream. Until it became a nightmare, in his junior year.

Zegel remembers that her son wouldn’t come out of his room. “He had difficulty in practice, getting along with his coaches. He had issues in school.” One doctor diagnosed him with an audio processing disorder. Another doctor said he had ADHD.

“I wondered, where was that coming from?” said Zegel.

He entered college enthusiastic and ready. He graduated in 2006, but when he left, “he had no drive, no confidence,” said his mom. Patrick became depressed and anxious. He was full of anxiety. He would scream out things in the middle of the night.

“None of us knew,” said Zegel. She bought books about bipolar disorder. No one suspected football was to blame.

Patrick Risha poses with his mother, Karen Zegel.

She tried to get him to balance his checkbook, to get a job. But he couldn’t.

Then one day, he called his mom on the phone. “He was angry, saying he had the dog’s leash around his neck. I tried for five minutes. I was so unsuccessful.” For the next few minutes, she was still on the phone, but heard silence on the other end. He had hanged himself while she was on the phone.

Risha was 32 when he killed himself. His brain was autopsied at the University of Pittsburgh and Boston University. Both came back with the same diagnosis: CTE, which can only be diagnosed postmortem.

“Across this country, there are families decimated by a member of their family who played high school or college football,” said Zegel.

Protecting players under 14

Zegel and Archie have teamed up with nine other families to bring their message to Congress: No rough contact in sports for children under the age of 14.

Dr. Robert Cantu, co-director of the Center for the Study of Traumatic Encephalopathy at the Boston University School of Medicine, said the moms are doing the right thing. He explained that young brains are highly susceptible to brain trauma, because while children’s heads reach adult circumference by the age of 5, children’s necks aren’t quite that strong,

Think of a bobble head doll, he said. The body is fixed, but the head can be violently shaken around. “They can’t hit very hard, but their brains are being jarred, because their necks are so weak and their heads are so wobbly.”

In addition, he pointed out that between the ages of 10 and 12 is a key time for neural circuits to be established for emotion, “our impulse control, our emotions, anxiety, depression,” said Cantu. If the brain is injured at that age, it can potentially impact that circuitry.

Cantu and his colleagues have found 90 out of 94 NFL players they’ve examined postmortem to have CTE. They’ve also seen it in 45 out of 55 college players and six out of 26 high school players they have examined.

Cantu said it’s not exactly clear why some players develop the disease and others don’t. He likened playing football to smoking. “Not everyone who smokes will get lung cancer, but if you smoke you greatly increase your odds.” Cantu added, “What counts is the amount of smoking – but how much you did it every day, and how long you did it.” It’s not just concussions, he said, but total exposure to the brain being hit, over and over again.

In addition, factors such as genetics and environment, along with how early players start experiencing trauma, may play a role.

In 2015, USA Football, the country’s governing body on youth football, limited full contact to just 30 minutes during a practice session. Steve Alic, spokesman for USA Football, said it’s the only medically endorsed practice guidelines for youth football. Alic added, “We will always evaluate our programs and resources and confer with leaders in medicine.”

This year, the coaches in the Ivy League voted to eliminate full contact from all practices for the upcoming season.

U.S. Soccer has banned heading for children 10 and under, and limited heading in practice for athletes between the ages of 11 and 13.

USA Hockey prohibits checking for children 12 and under as well as all girl’s and women’s leagues.

Speaking to Congress

Zegel and Archie are joining forces with others, including Debra Pyka, who recently settled with Pop Warner football, the country’s largest youth football league, over claims that her son’s CTE was linked to his years playing football. Keana McMahon, ex-wife of former Pittsburgh Steeler Justin Strzelczyk, will also be joining the women, along with Dottie Dargis, the aunt of former Atlanta Falcon Shane Dronett.

Aside from getting representatives to look at limiting contact sports for young athletes, they are hoping to start a campaign to eventually get 100 youth brains donated to the Boston University Brain Bank over the next two to five years.

Dr. Bennet Omalu, the first doctor to diagnose CTE in a professional football player, said it was high time to consider limiting contact in children. “The science has evolved. We have evolved as well. And in evolving, we are becoming more intelligent. For example, we used to use asbestos, but now we don’t,” said Omalu.

“We’re not the NFL. This is just a bunch of moms,” said Zegel. A bunch of moms who know loss.

“My son’s life was the cost of doing the business of football,” said Archie. It’s not the first time the NFL has had to hear from families who’ve lost loved ones who turned out to have CTE. The NFL has faced lawsuits filed by former players as well as their wives and families about the concussion issue.

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    “The NFL,” said Archie, “I think they should be as afraid as they’ve ever been. This is nothing to say about the wives, but it is different to bury a child that you are connected (to) by an umbilical cord.”