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And it all started 20 years ago this month, right here in Pittsburgh, when Dr. Bennet Omalu, a Ni­ger­ian-American pathologist at the University of Pittsburgh, helped uncover maybe the most important sports story of the 21st century:

Chronic traumatic encephalopathy, better known as CTE.

Just the sound of it triggers a swarm of emotion, concern and even dread, not to mention varying degrees of clinical analysis.

CTE is a rare brain disorder that is not fully understood and, after all these years, has fueled a multitude of misconceptions about the disease. It is widely accepted that CTE is caused by repeated head injuries, though not entirely. But the only way to definitively diagnosis CTE is after death, during an autopsy of the brain.

That hasn't stopped a myriad of unofficial CTE diagnosis and speculation, either from the medical profession itself or the "internet pathologists" on social media.

CTE

CTE became a large part of the sports medical lexicon in 2005 when Omalu first reported finding widespread brain damage in the autopsy of former Steelers center Mike Webster, who passed away in 2002 at age 50. Since then, concerns about CTE have inspired a global revolution in concussion safety and fueled an ongoing health crisis for the NFL.

"Since 2005, there has been a profound national dialogue about the risks and benefits of participation in contact sports," said Dr. David Okonkwo, the Steelers' neurosurgeon and one of the pioneers of a new type of testing for traumatic brain injuries. "The city of Pittsburgh has been at the center of this national dialogue the entire time."

Omalu's discovery, initially ignored and downplayed by NFL team doctors, led to a wave of scientific research that forced the league to acknowledge a link between football and brain disease. It also inspired the movie "Concussion," in which actor Will Smith portrayed Omalu.

"[Dr. Omalu] at that time stated this was an epidemic in the NFL," said former Steelers neurosurgeon Dr. Joseph Maroon, who has been at the forefront of developing testing for traumatic brain injuries for 35 years. "I was asked to comment in the paper, and I said that was quite a leap — I actually used the word 'fallacious reasoning' — to extrapolate from one case into an epidemic.

"Because of that statement, I was painted as a denier of CTE because of my association with the NFL."

Maroon, now 85, was portrayed that way in the movie, too, never mind that the ImPACT Test he co-developed in 1990 has now provided baseline tests for more than 25 million athletes and patients for concussions.

Last month, Maroon was presented the Ellis Island Medal of Honor in New York for his contributions to preventing brain injuries in sports — an award previously given to eight former U.S. presidents and six Nobel laureates.

"To be called a villain and a shill for the NFL, I think I've probably done more than otherwise," Maroon said.

Changing the game

In the years since he shook the NFL, some of Omalu's claims are now being painted as exaggerated and even baseless by members of the science and medical community who have spent the past two decades researching the disease. According to a 2020 story in the Washington Post, Omalu has withdrawn from the research community and travels the world as an evangelist, selling his version of what scientists know about CTE.

"My God, if people were actually following [Omalu's] criteria, the prevalence of this disease would be enormous, and there's absolutely no evidence to support that," said Dan Perl, a professor of pathology at the Uniformed Services University, in an interview with the Washington Post.

Perl was one of more than 50 experts in neurodegenerative diseases interviewed for the article. In effect, the story said Omalu, the man considered by many the public face of CTE research, "routinely exaggerates his accomplishments and dramatically overstates the known risks of CTE and contact sports, fueling misconceptions about the disease."

Either way, his initial evaluations caused a seismic shift in the way the NFL and other contact sports deal with concussions and brain trauma. They also increased awareness of CTE, even though experts still don't fully understand the causes.

They know this: It cannot be definitively diagnosed during life. And there is no cure.

"Bennett Omalu's case report was a landmark moment that has catalyzed 20 years of research and questions," Okonkwo said.

And the research continues, ready to take testing for head injuries to a whole new level.

Two months ago, the Federal Drug Administration gave clearance for a blood test that can detect concussions and traumatic brain injuries within minutes. Okonkwo was part of the research to develop the test along with the U.S. Department of Defense and Abbott Laboratories in Abbott Park, Ill.

The test is already being used by medics to assess wounded warriors in combat. It could one day be used in the NFL and other sports.

"We're excited the blood test technology will become available for sports-related concussions in the years ahead," Okonkwo said. "It will soon become a standard of care."

Confusion reigns

Omalu was actually not the discoverer of CTE.

In 1928, a report by pathologist Dr. Harrison Martland in the Journal of the American Medical Association (JAMA) described a condition found in boxers as "punch drunk syndrome."

More than 20 years later, an English pathologist named MacDonald Critchley reported the autopsy findings in boxers as chronic traumatic encephalopathy, or CTE. That was the medical world's first official diagnosis.

Eight decades later, CTE is still a much discussed, if not much confused, issue.

Some of the misconceptions about CTE have led to former players likely being over-diagnosed, according to a 2023 story in U.S. News and World Report.

Players with symptoms of depression or anxiety are far more likely to receive an unverifiable diagnosis of CTE as opposed to players without those mental conditions, according to a study.

Researchers argue that doctors are doing a disservice by handing out a CTE diagnosis — which cannot be diagnosed until after death — when there are more effective treatments for the mood disorders that led to the diagnosis.

Born in Pittsburgh

Specific testing for concussions began somewhat innocuously in 1990, thanks to former Steelers coach Chuck Noll.

And it happened one day when Maroon, the Steelers neurosurgeon for 34 years, told Noll that quarterback Bubby Brister would not be able to play in an upcoming game because of a concussion.

Noll was perplexed. He told Maroon that Brister looked fine and acted fine all week and wanted to know what evidence-based data led Maroon to that decision.

Maroon said he was merely abiding by guidelines drawn up by experts that said a player with a concussion must sit out a minimum two games. The NFL did not have specific guidelines at the time.

That wasn't enough for Noll.

"Chuck said, 'Look, if you want me to keep a player out, OK, but I want objective data, not specious guidelines without factual basis,' " Maroon said. "Now, I'm thinking, 'Who is he to tell me about this?' But I thought about it and said, you know what, he was right."

That started Maroon and partner Dr. Mark Lovell on the path to developing the first significant test to assess concussions.

They co-developed ImPACT — Immediate Post-Concussion Assessment and Cognitive Testing — the first neurocognitive computerized system used to assess severity of concussions and timing for when a player can return to contact sports.

Since 2007, the ImPACT exam has been employed by NFL team doctors and is used to help monitor concussions for athletes in other sports at all levels. More than 25 million athletes and patients have been base-lined with these tests. In August 2016, it became the only FDA-approved test for concussion evaluation.

The NFL has since developed a concussion protocol for all teams to follow before allowing a player back on the field. The protocol is based on the neurocognitive testing that is part of the ImPACT exam.

All because Noll wanted some type of concrete data about concussions.

"He really was the one who set in motion the idea that culminated in the ImPACT test with the conversation he had with Dr. Maroon," said Steelers president and owner Art Rooney II. "It really is one of the most important tools we have today to diagnose concussions and determine when it's safe for someone to return to play."

Noll's desire to find a more definitive way to test for head injuries eventually led to the formation of the Chuck Noll Foundation for Brain Injury Research in 2016.

The Pittsburgh region, with the world-renowned UPMC Sports Medicine Concussion Program, has been at the forefront of research and treatment of sports-related concussion injuries. The foundation is another way to make sure research in Pittsburgh is being funded.

"You can't tell the story of CTE without Pittsburgh and the giants that have been involved here," Okonkwo said.

"This is where it should start," said former Steelers running back Merril Hoge, who retired in 1994 after suffering two concussions as a member of the Chicago Bears, in an interview with the Post-Gazette several years ago. "Western Pennsylvania has been, quite honestly, the bedrock and pioneer of head trauma."

Hoge played seven seasons with the Steelers — five under Noll — and is the first NFL player to retire based on results from cognitive testing developed by Maroon. Hoge retired in 1994, more than 10 years before CTE became a national discussion. He later authored a book, "Brainwashed: The Bad Science Behind CTE and the Plot To Destroy Football."

A member of the board of directors for USA Football, the national governing body on youth and amateur levels, Hoge said continued research will do more than help players in the NFL.

He said it will help to further educate parents of children who want to play football about the facts of head trauma and what he called the "baseless myths" surrounding the condition. Hoge noted there are 4 million kids playing youth football.

"Countless athletes at all levels have benefitted from the last 20 years of sustained work to improve our understanding of the risk of concussions and to promote brain health," Okonkwo said.

"As someone involved with the care of athletes, I can say sports in general, and the game of football specifically, are safer today than they were 20 years ago."