Rob Burrow, rugby league player who raised awareness after Motor Neurone Disease diagnosis, dies aged 41

Rob Burrow, the former rugby league star who worked tirelessly to raise awareness around motor neurone disease (MND) after being diagnosed with the illness, has died at the age of 41.

Leeds Rhinos, where Burrow spent his entire league career, said in a statement: “It is with deep sadness that the club can confirm that former player Rob Burrow CBE has passed away, aged 41.

“Rob inspired the entire country with his brave battle against motor neurone disease since his diagnosis in December 2019.

“He passed away peacefully at Pinderfield’s Hospital near his home surrounded by his loving family after becoming ill earlier this week.”

Rob Burrow in action during his testimonial match. Pic: PA
Rob Burrow in action during his testimonial match. Pic: PA

Burrow played the sport internationally and won eight Super League titles with Leeds Rhinos before being diagnosed with the disease aged 37.

He was awarded a CBE in the New Year Honours List for his services to motor neurone disease (MND).

Burrow enjoyed a decorated career, representing Leeds Rhinos, England and Great Britain, but he will be best remembered for his bravery in a battle off the pitch that began in 2019.

Burrow, a fierce competitor, known for many years as the smallest player in Rugby League’s Super League, was determined to tackle his illness head on.

Speaking to Sky News shortly after his diagnosis, he said: “A few weeks past the diagnosis, I’m a lot better, I’m feeling positive and just ready to take it on.

“I don’t want pity. I don’t want people feeling sorry for me, I just want to go on as normal.”

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From November – Rob Burrow: ‘Kev is still my captain’

That trademark determination saw him help raise millions of pounds for charities doing research into the rare, degenerative brain and nerve condition that would eventually take his voice and confine him to a wheelchair.

His fundraising was supported by the Rugby League community, who rallied behind him and made his cause their own.

One of his first appearances in public following diagnosis was his testimonial game held at Headingley, the Leeds Rhinos home ground in January 2020.

Burrow was a legend at the club, having won eight super league championships and two challenge cups, as well as several individual honours.

Before the game, he came out to a rapturous reception with his three children Macy, Maya and Jackson, before running out in Rhinos colours one final time alongside some of his most famous former teammates.

One of those teammates was Kevin Sinfield, whose life has become indelibly linked to that of his friend.

Kevin Sinfield and Rob Burrow. Pic: AP
Kevin Sinfield and Rob Burrow. Pic: AP

Their special bond received royal recognition in January 2024, when The Prince of Wales awarded the pair with CBEs for their services to MND.

Traveling to Headingley to present the pair with their honours in front of their families, Prince William congratulated them for their “phenomenal” efforts raising funds and awareness for the disease.

Speaking in late 2023 alongside Burrow, Sinfield said: “Just because the Rugby stops, doesn’t mean those friendships stop and when one of your best mates is given the diagnosis Rob got, then you have a choice whether you stand shoulder to shoulder, or you don’t,” he said.

“What’s become clear is the fight and the spirit that I knew Rob had, he’s shown more than ever.”

Sinfield, who captained Leeds Rhinos to many of their most famous victories has completed several challenges to fundraise for MND organisations.

These include raising £1.5 million after completing seven ultramarathons in seven days, starting from Edinburgh and ending at Manchester’s Old Trafford stadium, reaching the finish line during the Rugby League World Cup Final.

An image that will live long in the memory was Sinfield carrying his friend over the finish line in May 2023, at the Rob Burrow Half Marathon in Leeds.

Rob Burrow and Kevin Sinfield cross the finish line of the 2023 Rob Burrow Leeds Marathon which started and finished at Headingley Stadium, Leeds. Picture date: Sunday May 14, 2023.
Pic: PA

Barrie McDermott, who also played at Leeds Rhinos with the pair can remember that day.

“Rob’s body had taken a lot of punishment, so the great leader that Kev is, made a decision. He was going to pick him up. And of all the things I’ve been a part of that is the most powerful image,” he recalled.

McDermott also shared his own special relationship with Burrow, with the pair a well-known little and large combination in the Rhinos dressing room.

Burrow stood at about 5ft 5 inches, while McDermott was about 5ft 10 inches, weighing close to 17 stone.

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‘Friendship and love’ behind Rob Burrow marathon

McDermott, who would text and visit Burrow regularly, called him a “beacon of light, strength and hope.”

“Rob Burrow in our game of Rugby League had a harder fighter to get seen to get noticed, but his legacy is, he’s done that,” said McDermott.

“He’s made people look and notice. The most important thing is to keep telling Rob’s story, keep talking about this little 5ft4 Rugby League player who was diagnosed with MND and went on a crusade to campaign for the MND sufferers and make sure those voices, even when they lost them were as loud as possible.”

Even as the illness progressed, Burrow’s willingness to be seen in the public eye, often alongside his wife Lindsey, meant he was able to help raise the profile of an illness that currently has no cure.

The Prince of Wales (right) meets Rob Burrow, his wife Lindsey Burrow and their children Maya (left), Macy and Jackson during a visit to Headingley Stadium, Leeds, to congratulate him on his efforts to raise awareness of Motor Neurone Disease. Picture date: Thursday January 11, 2024.
Prince William meets Rob Burrow and his family. Pic: PA

His campaigning and bravery are often compared to the Scottish Rugby Union player Doddie Weir, who died aged 52 in 2022.

Tanya Curry, The Chief Executive of the Motor Neurone Disease Association said Burrow “made a huge amount of difference.”

“Not only for donations and financial influence for the organisation, but actually in the campaigning arena.”

“It’s a rare disease, but actually something that people understand now. So, he has done so much for the community and we are honestly so grateful for that.”

Burrow leaves behind his wife and three children along with a legendary Rugby Legacy and an even bigger one in the fight to raise awareness for MND.

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