Rob Burrow’s work on raising awareness of MND has made an immeasurable difference - Stephen Naylor

It is a disease we still don’t know enough about and that is something researchers here in Yorkshire, across the country and around the world are doing their best to change, supported by the incredible generosity of fundraisers inspired by the likes of Rob, Doddie Weir, Stephen Darby, and so many more - including my brother-in-law Nick Smith.

Nick was just 38 when he died nearly seven years ago, just 101 days after being diagnosed.

Like Rob, he had been part of Leeds Rhinos family when he was younger and loved rugby league, he had a beautiful family and young children, and the diagnosis was devastating.

Even now, all these years on, I can’t get my head around how he must have felt. Again, like Rob, he was fit, otherwise healthy and had everything to live for. But on one Saturday afternoon in a hospital in Elland everything he knew was ripped away.

He knew there was no treatment, he knew there was no cure, he knew he was dying. I can’t even begin to imagine that.

It does though, sadly, mean we can imagine how Rob’s family and friends are feeling this week – devastated, angry, numb. My heart goes out to them and I know nothing can take away that pain.

What I hope they can, in time, take comfort from is the work that Rob has done in raising awareness of MND and so much money for our shared fight against the disease.

There are incredibly talented researchers and scientists, many of them here in Yorkshire at the brilliant SITraN research centre in Sheffield, spending their lives dedicated to understanding more about the disease so that effective treatments can be found and, we hope, one day a cure. We are getting closer, but the steps are small and the challenge is huge.

Rob’s work, talking about the condition and inspiring so many, has made an immeasurable difference.

His friendship with Kevin Sinfield and the incredible fundraising efforts assure a lasting legacy and I hope that provides some comfort to those who loved Rob, just as it has to us in the years since Nick died and the nearly £200,000 we raised with the charity in his name.

It matters. Every penny does. Because, today, six people in the UK will face the situation Rob and Nick both faced - in a consultant’s room in an anonymous hospital they will be diagnosed with MND and told they will die, and soon.

We owe it to them, to their families and to the many more who will be diagnosed tomorrow to work as hard as we possibly can so that diagnosis is no longer a death sentence. For Nick, for Rob, and for all those who have faced and died from this cruel, cruel disease.

Stephen Naylor is the owner of Brighouse-based communications and strategy consultancy Waverley.