Pitt unveils National Sports Brain Bank to track patients with contact-sports backgrounds

Julia Kofler at podium

By SHANNON O. WELLS

Before his untimely death in 2018, Bill Caroselli, who chaired the Pennsylvania Supreme Court’s Disciplinary Board, distinguished himself as a community leader, philanthropist and prominent Pittsburgh trial lawyer.

“He did so much for the community,” his widow Dusty Kirk shared during a recent Pitt campus visit, noting her husband’s experience as a high school and Brown University football and rugby player. When Caroselli started having difficulty articulating words, however, their lives changed.

Oscar Lopez at the Alzheimer's Disease Research Center in Pitt’s School of Medicine found Caroselli’s symptoms didn’t jibe with those commonly associated with athletic-based brain injuries. At Lopez’s suggestion, Caroselli agreed to donate his brain to the research center for study after he died.

A few months after Caroselli died, a report informed Kirk that her husband had progressive supranuclear palsy, a brain-stem condition unlikely to be diagnosed when he was living.

“Knowing the cause of what happened to Bill gave me some peace of mind,” Kirk said. “I knew it wasn't from the sports that he loved to play. And it assured me that (by donating his brain) I had done the right thing — and not just for Bill, but for others who might present with similar symptoms.”

Kirk shared her story at a Petersen Events Center news conference on May 18. With the help of two former Pittsburgh Steelers and two neurosurgeons, Pitt officials announced the launch of the National Sports Brain Bank (NSBB) a novel research approach to track and study, throughout their lives, those with experience in a wide range of contact sports and activities.

The bank will serve as a brain-donation portal for former contact-sports athletes with or without degenerative symptoms, as well as a center for long-term observational studies — including longitudinal, years-long examinations of individuals’ medical, behavioral and mental health.

Former Steelers running backs Jerome Bettis and Merril Hoge joined Joseph Maroon, a neurosurgeon in Pitt’s School of Medicine, and Regis Haid, past president of the American Association of Neurological Surgeons — both of whom played Division 1 contact sports — in pledging participation in the brain bank. Another anonymous donor pledged support during the live-streamed announcement event, with nearly two dozen more stepping forward as of May 24, said Chuck Finder, a Pitt spokesman.

While donating is not limited to those who experienced a known concussion or exhibit degenerative symptoms, at-risk athletes from sports such as football, hockey, soccer, boxing and wrestling are invited to donate, as well as those who took part in such concussion-prone activities as cheerleading, equestrian and motocross.

A team led by Julia Kofler, director of Pitt’s Division of Neuropathology and co-director of the Alzheimer’s Disease Research Center, will regularly evaluate participants throughout their lives. After a patient dies, neuropathological examinations of their brain will look for evidence of CTE, Alzheimer’s disease, Amyotrophic Lateral Sclerlosis (ALS or Lou Gehrig’s disease) and other neurodegenerative diseases.

“We're specifically interested in looking at … patients that have a very well-defined risk exposure, and that is sports-related concussions,” Kofler said at the news conference. “So we know there is emerging increasing evidence that concussions, or repetitive concussions, can lead to a chronic neurodegenerative process called chronic traumatic encephalopathy,” a buildup of a protein in the brain called phospho tau.

She said they have made significant progress in recent years to define the pattern seen in the brain in people with CTE, which allows researchers to distinguish it from other diseases, like Alzheimer’s and other neurodegenerative disorders. “So we're looking at very specific patterns in these brains,” she said.

Pitt Chancellor Patrick Gallagher called the brain bank project “obviously a topic of great urgency and importance for athletes of all levels and for their families,” adding that “the enormous potential for scientific discoveries and clinical interventions to protect and extend healthy brain function are potentially game-changing for all of us.”

Moving on with life’s work

The Chuck Noll Foundation provided funding to launch the NSBB with a gift of $125,000, which The Pittsburgh Foundation matched.

In its six-year history of donating toward brain injury research, the foundation, named for the late Hall of Fame Steelers coach, has disbursed 19 grants totaling $2.6 million. The Richard King Mellon Foundation also awarded $500,000 to help to launch the brain bank.

Such donations will merge with Pitt’s existing Neurodegenerative Brain Bank. Founded more than 35 years ago and now one of the largest in the country, the bank — which unlike the NSBB doesn’t track and study at-risk patients through their lives — has collected more than 2,000 specimens in the Division of Neuropathology that can be used for comparative analyses.

“The purpose of the brain bank, as (Kofler) so beautifully outlined, is to get this information before the patient or the athlete has passed on,” said neurosurgeon Joseph Maroon. “So, prospectively and longitudinally we're gathering information that will be utilized to correlate with the autopsy situation, to better define all of the questions that are still out there and that need to be answered.”

Gallagher praised the donations as well as Noll’s frequent encouragement for players to think ahead to when they would “move on with their life’s work” post-football.

“For all the men he coached, he knew that they were more than athletes on a playing field — with families and communities, people who were counting on them and important life work to do after football,” Gallagher shared. “The work of the National Sports Brain Bank here at Pitt School of Medicine is very much an extension of that legacy.

“We're seeking answers to help amateur and professional athletes both compete at the highest levels they can, but also to continue their life's work with their brain health intact,” he added. “So I find it very fitting that we partner with the Chuck Noll foundation on this.”

Six people lined up a news conference

Present and future benefits

Merril Hoge, who played for Noll as part of his seven seasons with the Steelers, reflected that Noll’s look-ahead phrase “usually came out about two times, toward the end of the year. And then if you got beat 51 to nothing against Cleveland, he said, ‘We're probably going to be on to our life’s work a lot sooner than everybody expected if we don't change things around,’ ” Hoge recounted, drawing laughter from those gathered.

Noting that it’s “not an easy decision to donate anything, quite obviously (something involving) your brain,” Hoge shared another Noll-ism he got from his coach “some 37 years ago that I use almost daily: ‘Tie yourself to people that are credible.’ And that's a critical component when you're looking at this type of research. If you want to think this is going to be a biased brain bank, well, that was exposed by their invitation for all brands.”

Hoge in 2018 co-authored the book “Brainwashed: The Bad Science Behind CTE and the Plot to Destroy Football,” with forensic neuropathologist Peter Cummings. It was the death of Hoge’s former teammate, Mike Webster, in 2002 that first drew attention to the possible risks of CTE in the NFL.

“You cannot create a hypothesis and then make your science fit that. That's called corruption,” he added. “And that's not going to be a part of this. It's a foundation focused on the thing that Chuck believed in, integrity. … And that's why I chose to donate here.”

Jerome Bettis, while admitting the enormity of choosing to donate one’s brain to science, said the reasons making it a “really easy decision” for him include helping to provide answers “to the next generation” regarding diseases like dementia and Alzheimer’s, as well as his role as a father.

“My son plays high school football. My daughter played high school basketball. She had multiple concussions,” he explained. “And so for me, it's important that I be that role model to show that we have that job, if you will, as a parent to help protect our children. And that's providing the information that can possibly help my son or my daughter in later years or someone else's son or someone else's daughter.

“As a leader I've always felt that you lead by example,” Bettis added. “And hopefully I can do that, and spur some of my former teammates and former players to come forward — not just in football but in multiple sports — so that we can understand what we're dealing with and do a better job with the next generation.”

Shannon O. Wells is a writer for the University Times. Reach him at shannonw@pitt.edu.

 

Have a story idea or news to share? Share it with the University Times.

Follow the University Times on Twitter and Facebook