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Parents, doctors prod NFL on brain injuries

Athletes help BU’s research into effects

Dr. Ann McKee at Edith Nourse Rogers Memorial Hospital Bedford VA Medical Center. Dr. Ann McKee at Edith Nourse Rogers Memorial Hospital Bedford VA Medical Center. (David L. Ryan/ Globe Staff)
By Kay Lazar
Globe Staff / February 2, 2010

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There was the nasty concussion Ben Price suffered from an eighth-grade skiing accident. Then the countless jarrings from wrestling and baseball. By senior year, he was plagued by nagging headaches after football practices at Wayland High School.

His mother, Wendy Price, did not connect the incidents until a chance conversation last year with another parent at a youth soccer game. That parent, Dr. Ann McKee, is studying a form of early dementia that was once thought to develop primarily in boxers. Now McKee and her colleagues think the disease may be silently destroying the brains of athletes in a variety of sports after years of repetitive blows to the head.

“You don’t know who is going to be the unlucky one,’’ said Price, who asked McKee to speak at a forum in Wayland.

The turnout - 200 parents, coaches, and students attended - was a sign of the success of the nation’s first center to study chronic traumatic encephalopathy, or CTE. Created by McKee and three partners 17 months ago at Boston University Medical School, the center has quickly spread awareness about the dangers of repetitive head injuries, largely by targeting the National Football League.

The NFL has recently begun airing commercials warning young athletes of potentially permanent memory problems, a remarkable turnabout, given the league’s long reluctance to acknowledge the link between head trauma and later disease, although retired players appear to suffer unusually high rates of dementia.

The league announced new rules in December that bar players who suffer concussions from returning to practice or competition until they have been cleared by an independent neurologist. And the NFL encouraged current and retired players to participate in the BU center’s research and pledged $1 million to fund the work. Sixty players have agreed to donate their brains for autopsies upon their death, including 20 announced yesterday.

To bring about the league’s high-profile capitulation, the BU center borrowed a page from the playbook of other public health crusades that ultimately changed attitudes: It combined painstaking research with a relentless media campaign.

But the speed of the BU center’s early success is surprising, said David Hemenway, a Harvard University health policy professor who has traced the arduous paths of dozens of other public health campaigns. “What’s always hard, in terms of getting public recognition, is the injuries that are cumulative over time, such as lead poisoning,’’ he said.

Each year, an estimated 135,000 children between the ages of 5 and 18 are treated in emergency rooms for sports and recreation-related brain injuries, according to the US Centers for Disease Control and Prevention. Athletes who have had a concussion are at increased risk for another one, leaving them vulnerable to potentially longlasting or permanent damage.

“The real problem is on the youth sports level; there are millions of kids,’’ said Chris Nowinski, 31, a center cofounder and a former Harvard football player and professional wrestler who retired in 2003 due to multiple concussions. What followed, he said, was a five-year-long fog of headaches and short-term memory problems.

“If I have CTE, it’s probably too early to see symptoms, and so part of my mind is waiting to see the other shoe drop,’’ Nowinski said.

In 2007, to publicize the dangers of repetitive concussions, Nowinski cofounded a research nonprofit, Sports Legacy Institute, with Dr. Robert Cantu, an Emerson Hospital neurosurgeon and a concussion specialist.

“The problem was, the NFL had the big microphone and would dispute the issue until they couldn’t anymore,’’ said Nowinski. “The way to combat their publicity was to link up with a big academic university.’’

In the fall of 2008, they teamed up with two “scientific rock stars,’’ as Nowinski calls them, to form the CTE center at BU: Robert Stern, an Alzheimer’s disease specialist who created a widely used test that assesses memory and brain function, and McKee, the Wayland soccer mom and scientist who has studied thousands of brains at the New England Veterans Administration brain bank she directs in Bedford.

In the months leading up to the public launch of the center, Nowinski quietly approached the families of 11 recentlly deceased NFL and college football players and received permission to have McKee examine the players’ brains for signs of CTE.

McKee pinpointed in those brains the buildup of a toxic protein called tau, in a unique pattern not found in any other brain disease except CTE. Tau accumulations, which are also involved in Alzheimer’s disease, prevent nerve cells from making normal connections with other cells, eventually killing them.

Scientists believe that repetitive blows, even seemingly innocuous ones, cause a chemical change that sparks the tau buildup. That buildup causes erratic behavior, memory loss, depression, and, ultimately, dementia.

The frightening scope of CTE did not hit home for McKee, however, until she found it in the brain of a 12th football player, a deceased high school athlete. He had suffered several concussions playing football and other sports before dying at age 18 of a cause the family has not made public. There were the telltale spots of CTE in its earliest stages.

“It was chilling,’’ said McKee, a self-described “huge sports fan’’ whose father and brothers played football. “I felt that could just as easily be my son, who was 18 years old and a soccer goalie at the time.’’

The four partners had decided early on that their role would extend beyond science. To create a sea change in sports culture, Nowinski said, the team knew it needed a high-profile target: the NFL. Following its September 2008 launch, the center methodically and dramatically announced its findings of CTE in a number of deceased NFL players, including John Grimsley and Tom McHale. .

The media campaign clicked and captured the attention of Congress. In October, the House Judiciary Committee conducted public hearings on the NFL’s handling of head injuries among active and retired players.

Despite the rapid progress, the BU team’s work has just begun. One of the center’s goals is to develop a test to identify CTE in its early stages and potential therapies to treat it.

The scientists readily admit that they have more questions than answers. For instance, they do not know how many blows, or the force of the impacts, that the head could sustain before toxic tau activity is unleashed.

“We need to know who gets this and why,’’ said Stern, the center’s Alzheimer’s specialist.

For doctors who treat children with sports concussions every day, the center’s work has directed a much-needed spotlight on an underrecognized issue, said Dr. Gerard Gioia, a neuropsychologist at Children’s National Medical Center in Washington and the father of three children who play sports.

“Our culture is very focused on sports and heroes,’’ Gioia said. The BU center’s “work shows that if this can happen to these NFL guys, some of the biggest, and strongest, people, then that’s pretty amazing. It says we better take this seriously because it can happen to my 7-year-old playing ice hockey, or daughter playing field hockey or lacrosse.’’

Kay Lazar can be reached at klazar@globe.com.

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