Footballers’ families set up brain bank to fight dementia crisis
Similar move in US led to $1 billion breakthrough Relatives still waiting on research promised by FA
Families of former British footballers have agreed to create a ‘bank’ of donated brains to deliver new and potentially conclusive medical evidence of the link between football and dementia.
The National Football League only acknowledged how American football has caused chronic traumatic encephalopathy (CTE) after the disease was repeatedly diagnosed following hundreds of autopsies by the Boston University ‘Brain Bank’, and a comparable body of research could now take place in the United Kingdom.
The distinct tau proteins that are the hallmark of CTE – a devastating strain of dementia that is caused by repeated blows to the head – can only be identified in post mortem, and football’s first case was discovered by the Scottish neuropathologist Dr Willie Stewart in the former England striker, Jeff Astle.
Parts of Astle’s brain will be shown tonight on the BBC documentary, Alan Shearer, Dementia, Football and Me – and The Sunday Telegraph can reveal that a group of families have also now offered to release the brains of other former footballers when they die.
They include Ernie Moss, Chesterfield’s all-time record goalscorer, who has been suffering with suspected CTE since his late fifties and can now no longer speak or complete routine tasks.
“As a family we would like to donate his brain because it is only going to help others,” said Nikki Trueman, Moss’s daughter. “It’s a heartbreaking, horrendous and harrowing thing to have to do but I do think that’s what we’ll find. All of us – my mum, my sister and me – had decided separately that it is something that needs to be done.”
The Jeff Astle Foundation has been contacted by the families of more than 300 suffering former players, including a growing number who are ready to donate the brain of a loved one. “It is an individual decision but sadly, at this moment in time, the only way to diagnose CTE is in post-mortem,” said Dawn Astle, Jeff ’s daughter. “For us, it was bad enough knowing that football killed dad but, to not know, would have been even worse. We believe that it is the tip of the iceberg.”
The decision to allow tissue samples to be screened tonight was extremely difficult. “We had to put our emotion to one side and think of the bigger picture,” said Dawn. “Dad’s brain was splitting; he was a footballer and we felt it needed to be shown.”
The families have repeatedly stressed that compensation is not in their minds but the safety of current and future generations. They also want football to acknowledge the current suffering and assist with appropriate care.
The NFL eventually agreed a $1billion compensation settlement and the authorities in football have been warned that ignoring the issue could become increasingly costly. If there was ever a claim, the authorities would have to disclose what they have done and what evidence has been put to them. The Telegraph has revealed previously how a published study by the senior registrar at Guy’s Hospital recommended research as far back as 1995. The Astle inquest of 2002 also attributed his death to football. “It does put them at risk – it depends what recommendations have been made and what the background medical advice was,” said Steven Baylis, a partner at Lime Solicitors. “They need to engage and volunteer the information rather than wait. Once they have done all they can, anything beyond that point, you would think they would be protected. The quicker they act, the smaller the window of potential negligence. If they front up now, that does at least minimise the risk and protect future generations.” Following a campaign by the Astle family and The Telegraph, the Football Association and Professional Footballers’ Association have promised to fund new research into whether former players are suffering disproportionately with degenerative brain disease.
Dementia victim: Ernie Moss, Chesterfield’s all-time record goalscorer, can no longer speak