Kevin Sinfield raises more than £7m for MND charities

As his feet hit the pavement, Kevin Sinfield felt jolts of agonising pain shoot through his body – but giving up on his gruelling challenge of seven ultra-marathons in seven days wasn’t an option. The former Rugby League player was not just running for his best friend of 15 years Rob Burrow, but for the thousands of other Britons living with devastating motor neurone disease.

Kevin, 42, was inspired to take on the tough endeavour after his former Leeds Rhinos teammate Rob was diagnosed with the neurological condition in late 2019.

“Right at the start it was all about Rob,” says Kevin. “He was the guy I wanted to help more than anybody. And then you realise pretty quickly that this is everywhere. There are 5,000 people across the UK with motor neurone disease.”

His fund and awareness-raising mission inspired and brought hope to so many of those thousands suffering, including Rob, the childhood friend he started doing it for.

“Everyone needs a friend like Kev,” says Rob, summing up so well the bond they have shared since they met when Rob was just 12, and Kevin 14.

And what a friend he has been.

In just the last three years, since Kevin decided to do a “run for a mate”, he has raised millions for MND charities and research into the disease.

First, inspired by Rob’s playing number seven, came the seven marathons in as many days, raising £1.1million.

A second almost a year later called the Extra Mile challenge, saw him run from Leicester Tigers’ stadium to the home ground of Leeds Rhinos – the team they had played for together. The journey was 101 miles, undertaken in 24 hours of no sleep.

“Actually it ended up being 104 miles, because we got lost twice, so it was a fair stretch,” says Kevin.

A year on, Kevin decided to do his hardest one yet – the Ultra 7 in 7.

He aimed to raise £777,777 by doing seven tough ultra-marathons in seven days, taking in a massive 40 miles per day. Now, Kevin’s incredible achievements are the focus of a BBC documentary, Kevin Sinfield: Going The Extra Mile.

Airing tonight, it follows Kevin on his journey, showing previously unseen footage of his challenges. Scrum-half Rob was diagnosed with MND just two years after he had finished his playing career in 2017, after captaining Leeds Rhinos to a record eighth Super League Grand Final.

A rare condition that affects the brain and nerves, MND is terminal but some people, such as the late physicist Stephen Hawking, can live with it for many years. It causes symptoms such as progressive problems with speech, walking and swallowing, muscle spasms and a weak grip. Father-of-three Rob has spoken out about the heartbreaking effects of the disease on his life, describing himself as a prisoner in his own body.

The change from the boy Kevin first met is stark. Recalling the early years of their friendship, Kevin says: “He was so small and so quick, he had superhuman powers as a player. We sat next to each other in the dressing room and spent the next 15 years together.”

In the documentary, he is visibly emotional as he speaks about the moment he found out his close friend had the disease. “Rob got diagnosed in December 2019,” he says.

“He knew something wasn’t right but didn’t quite know what, and then that text message lands which has the horrific news on it – he’d got motor neurone disease.

“I didn’t know much about MND at the time. I very quickly Googled like everybody else would and you see those terrible stats – 33 percent die in the first 12 months, 50 percent die in the first two years. You find yourself thinking, ‘Rob’s staring down the barrel of a big shotgun’.

“Initially, it was about trying to raise money for Rob and his family and to show support like we all do when friends need it.”

In November 2022, Kevin started his Ultra 7 in 7 at Murrayfield in Edinburgh. Before setting off, he was visited at the stadium by rugby union player Doddie Weir who, like Rob, also had MND. The moment had extra poignancy, as it would be the last time Kevin saw Doddie before he died from the disease a week later.

“When I look back, he was telling us that day when he turned up,” says Kevin. “I described him as the big brother who will be sadly missed.”

The rest of the route took Kevin through cities including Newcastle, Leeds and Bradford.

He had a surprise greeting from Rob and Lindsey Burrow when he arrived in Headingley on the sixth day. Finally, Kevin finished at Old Trafford, running onto the pitch for the halftime whistle at the Rugby League World Cup final.

On that day, November 19, Kevin was greeted by deafening cheers.

“To come out in a stadium like that, with 70,000 people all behind you is something we will remember forever,” he recalls. “They’re not moments where you have them and move on. They leave a mark on you, they’re moments to be talked about and cherished.”

Kevin is very well known in rugby union, too, thanks to his current role as defence coach for England ahead of the Rugby Union World Cup, as well as the Six Nations championship starting this weekend.

So far he has raised more than £7million through his three challenges and has been awarded an OBE. Along the way, he has also met many MND sufferers, including those who lined the streets to support him.

He says: “I met a guy on the route on the last day who had not been out of his house for two years. Those moments are tough.”

In December, he also received a standing ovation and special award at the BBC Sports Personality of the Year ceremony in Salford. Despite his accomplishments, Kevin says he was simply helping a friend in need – something anyone would do in that situation.

“I think everyone can imagine what they would do for their friend in the same position,” he adds. “The overwhelming support has shown that we are a nation that cares about people who are facing their own adversity.

“I am proud to be part of the MND community. The people who are living with the impact of MND who I have been privileged to meet since 2020 inspire me every day and we will never stop banging the drum for MND until we find a cure.”

One of those is Ian Flatt, who was diagnosed with the condition in March 2019.

“Thanks to Rob and Kevin, this whole movement has started,” Ian says.

“MND has gone from something that is rarely spoken about, rarely understood and badly underfunded to something that at times feels like a bit of a celebration.”

Sue Lodge, who has had MND since 2012, says: “When you’re given a terminal diagnosis, you go into panic mode. But I try and keep going, I don’t give up.

“When somebody says, ‘What have you got?’ and I say, ‘MND’, they automatically say, ‘Doesn’t Kevin Sinfield run for Rob Burrow?’. How can one human being do that for others that he doesn’t even know.”

And Rob himself is full of praise for Kevin, adding: “I’d often say I would do the same for you but these challenges are beyond my means. On behalf of me and all the sufferers out there, thanks from the bottom of our hearts.”

• Kevin Sinfield: Going The Extra Mile is on BBC Two tomorrow at 7pm.