You may not have heard of the former professional baseball player Pete Frates but you may just be familiar with his work. Five years ago a Facebook video in which Frates upended a bucket of ice-cold water over his head in order to raise money for motor neurone disease – or ALS, as it is known in the United States – swiftly went viral. Within weeks something that became known as the Ice Bucket Challenge was on the way to becoming a global sensation, raising almost £100m in that initial summer alone.

A couple of weeks ago Frates died peacefully at the age of 34. He was diagnosed with motor neurone disease in 2012 and though he had spent the past seven years tirelessly raising awareness of his condition, his passing was an ice-cold reminder this is a contest with only one outcome. There is no known cure for MND, and what makes last week’s news about Rob Burrow so heartbreaking is that for all the defiance and dignity with which he has been discussing his diagnosis, he, too, is now on the same horrific and inexorable journey.

It is two years since Burrow took his curtain call for Leeds Rhinos at the end of a 17-year career. Fittingly, it coincided with a record eighth Super League Grand Final victory against Castleford and the memory of Burrow hurling himself into tackles in the driving rain at Old Trafford remains shockingly fresh. He is 37 and although he remains optimistic of living at least another five years, nobody can really be sure. He has a wife and three children under the age of eight. It is numbingly, unspeakably cruel.

Leeds Rhinos' Rob Burrow inspired by Doddie Weir after MND diagnosis Read more

There is, understandably, a sort of time-honoured liturgy to these very public tragedies: the wave of sympathy and solidarity, the outpouring of grief, well-meaning tweets, grand gestures of generosity. The illness itself is recast as a fight or a battle: an attempt to engender hope from this most hopeless of situations. Yet, at the risk of striking a dissonant note, perhaps there are one or two less comfortable problems that need to be raised at this point.

Perhaps they should have been raised more widely in 2007, when the former Great Britain captain Mike Gregory died tragically young from a form of MND. Or in 2011, when the Warrington stalwart Paul Darbyshire died aged 41. Or when the former NRL players Adam Maher or Paul Fisher were diagnosed in recent years or when Keighley’s Phil Stephenson passed away in September. Or after Doddie Weir, Joost van der Westhuizen, Tinus Linee or Ken Waters from rugby union revealed they, too, were stricken. For a condition that is supposed to affect one in 50,000, rugby needs to ask itself why so many of its number are getting so desperately unlucky.

Burrow, for his part, doesn’t think rugby played a part in his condition. Nor does Weir, who spoke so movingly at last week’s Sports Personality of the Year ceremony. This should probably not surprise us: it is terrible enough to suffer from terminal illness, worse still to confront the possibility that your own choices may have contributed. The short answer is that we don’t know whether there is an established link between contact sport and degenerative brain diseases such as MND. What we do know certainly doesn’t rule it out.

In February, an analysis in the Global Spine Journal found that professional athletes who were prone to repetitive head or neck trauma – such as soccer or American football – were eight times more likely to develop MND than the general population. A study commissioned by the FA found professional footballers born before 1976 were around four times more susceptible to MND. None of this proves anything on its own: what is required is more research, more data, more dedicated studies. The burning question is who is going to commission and fund them and what questions they are going to ask.

Facebook Twitter Pinterest Doddie Weir, who received an award at the BBC’s Sports Personality of the Year, was diagnosed with MND in 2016. Photograph: Jane Barlow/PA

Recent history suggests that leaving the problem in the hands of the sports themselves is not the best idea. Football, famously, spent decades burying its head in the sand over its links to dementia. The NFL, too, spent years actively thwarting attempts to establish a link between its sport and concussion. Not until the weight of public pressure reached calamitously tragic proportions did it finally admit the nature of the problem.

Faced with a growing trail of devastation, will the two rugby codes show any greater leadership? World Rugby’s response to the February study was to stress its conclusions were “not qualitative or rugby specific” and called for further research without ever specifying who would carry it out.

Meanwhile on Monday, Simon Johnson, the chairman of the Rugby Football League, explicitly ruled out a link between rugby and MND. “Unfortunately MND appears to be a cruel, random disease that can strike at anybody,” he told League Express, with a degree of certainty that thus far appears to have eluded medical science.

Landmark study reveals link between football and dementia Read more

Can safety be improved? Can high-impact sports offer genuine protection against head trauma? Can parents and players be better informed of any risks involved? Or will we shirk the difficult questions in favour of easy platitudes, dissemble and prevaricate, pretend that cases like Burrow’s and Weir’s are no more than feelgood tales of human inspiration?

Rugby league is a wonderful sport full of wonderful people and that generosity of spirit has been much in evidence over the past few days. But as well as asking what it can do for Burrow now, it should ask what it can offer the next Rob Burrow beyond thoughts and prayers.

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