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

The Sunday Telegraph - Sport - - Front Page - By Jeremy Wil­son DEPUTY FOOT­BALL CORRESPONDENT

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

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