The Concussion Legacy Foundation, formerly Sports Legacy Institute, is a Boston-based 501(c)(3) non-profit organization that was founded on June 14, 2007, by Chris Nowinski and Dr. Robert Cantu. Chris met Dr. Cantu, a world renowned concussion expert, in 2003 while seeking treatment for severe post-concussion syndrome due to a concussion suffered during his career as a professional wrestler with WWE. During the first office visit, Dr. Cantu changed everything Chris thought he know about concussions. As both a college and professional athlete, Chris had never been taught the signs and symptoms of a concussion, so he didn’t report them or even know he had them while playing football at Harvard. He wasn’t told the value of resting after a concussion, nor was he warned of the long-term effects. Chris decided to bring the information Dr. Cantu provided him into the public eye, and set a goal to change how concussions were understood and handled in sports.
Along the way, Chris and Dr. Cantu became focused on one specific neurodegenerative disease – Chronic Traumatic Encephalopathy (CTE) – which was previously known as “punch drunk” because it was thought to only exist in boxers. All available evidence indicates CTE is caused by brain trauma, and Chris and Dr. Cantu began to acquire the brains of deceased athletes for study. After proving that former NFL player Andre Waters had CTE when he committed suicide in 2006, they began building a home for future research and advocacy by founding the Concussion Legacy Foundation.
Today, the Concussion Legacy Foundation is dedicated to solving the concussion crisis by advancing the study, treatment, and prevention of the effects of brain trauma in athletes and other at-risk groups. We achieve this mission through advocacy, education, policy development, and medical research. In 2008 the Concussion Legacy Foundation and the Boston University School of Medicine partnered, in collaboration with the U.S. Department of Veterans Affairs (VA), to form the Center for the Study of Traumatic Encephalopathy (BU CSTE) and founded the VA-BU-CLF Brain Bank, which now includes the largest CTE tissue repository in the world. After five successful years, the BU CSTE merged into the NIH-funded Boston University Alzheimer’s Disease Center (BUADC) and was renamed the BU CTE Program, where multiple research programs are focused on learning how to diagnose and treat CTE.
The Concussion Legacy Foundation funds and supports concussion and CTE research worldwide while translating new research findings into education programs, policies, and initiatives to allow sports to be played more safely. Education program such as Advanced Concussion Training and Team Up Against Concussions have trained tens of thousands of coaches, parents and athletes. Dr. Cantu and Chris also advise numerous sports organizations, including the National Football League, NFL Players Association, the Ivy League, NOCSAE, World Rugby, and Major League Lacrosse, to create change from the top down. Foundation innovations such as Safer Soccer and the Concussion Checklist are changing the way sports are played. While CLF has had many successes since 2007, we will not rest until we make sports safer and develop effective treatments for concussions and CTE.
Why Are We Called Concussion Legacy Foundation?
"Concussion" was chosen because it is the invisible injury—with real consequences—around which all our work revolves. We exist to ensure that in the future, fewer lives are changed by concussions, subconcussive injury, and CTE. Through focused education, thoughtful policy changes, and cutting-edge research, we want to change the way we think about concussion and concussion safety, ultimately leading to a safer future for tomorrow's athletes.
“Legacy” was chosen for two significant reasons. First, our initial efforts focused on neuropathology. The only way to diagnose Chronic Traumatic Encephalopathy (CTE) is through the examination of brain tissue after an athlete has passed away. Our important research findings, which have changed how brain trauma is approached in sports, required courageous families to entrust their loved one’s brain tissue to us post-mortem. The word “legacy” was chosen to reflect the far-reaching, permanent, and positive impact made by those families and future donors. What we have learned from men like Tom McHale, Wally Hilgenberg, or John Grimsley has changed the world of sports forever, and for the better. The Concussion Legacy Foundation will always honor their legacy and contribution to safer sports.
Second, “legacy” was chosen to emphasize the fact that sports-related brain trauma in children leaves a permanent legacy in developing bodies. Brain trauma can lead to CTE, an irreversible disease. Therefore, in some way, every hit to the head leaves a mark, or a legacy, on a child’s future. When SLI was founded in 2007, concussion education was not mandatory in youth sports programs, and didn’t emphasize appropriate return-to-play guidelines. We need to continually ask ourselves, “What is the legacy that youth sports leaves on our children’s futures?”