The Concussion Legacy Foundation has started a brain bank in Sydney in the expectation that many families in Australasia will be seeking answers to why their loved ones have died of dementia - just as they have in the United States.
The foundation, the brainchild of former professional wrestler Dr Chris Nowinski, is "dedicated to advancing the study, treatment and prevention of the effects of brain trauma in athletes and other at-risk groups".
The foundation's website tells the stories of the donors - many written by family members struggling to connect the threads of the life of their loved ones in a way that makes sense.
They are not all famous athletes, though several are. Many, however, are high school athletes who never got a chance to grow old.
There is a small section for former rugby players, including Barry "Tizza" Taylor, the Australian whose brain neuropathologist Dr Ann McKee described as "very badly affected by CTE. Just the worst. It was, like, textbook".
In 2017, the Herald talked to former Junior All Black John 'JJ' Williams who believes he is living with chronic traumatic encephalopathy. He has committed to donating his brain to a brain bank when he dies to see if his and his physician's fears are confirmed.
Dylan Cleaver: Why I've changed my mind about kids and contact sport
Head injuries in contact sport: 'It's not about concussion'
The Longest Goodbye: Dylan Cleaver's award-winning series on rugby and the dementia dilemma
"It's very important to me. I want to do something to help," Williams said at the time. "There will be a lot of old rugby players sitting around like me not really sure what's going on with them and don't know why they're doing silly things.
AdvertisementAdvertise with NZME.
"I hope that by sharing my story some of them will not be embarrassed to seek help like I was for so long."
Nowinski says the partnership with the University of Sydney gives them the opportunity to further research into the disease, and perhaps give a clearer idea as to the extent of the problem in sports such as rugby, league and AFL.
"We are trying to take the research global by partnering with universities around the world, to create the same relationship we have with Boston University," he said.
Nowinski expects there will be some interest from New Zealand. While there is a brain bank in Auckland, it doesn't actively seek the brains of former athletes, something the Concussion Legacy Foundation has done for the past decade.