A look at Rob Burrow’s campaign to raise awareness of motor neurone disease

Rob Burrow has died at the age of 41 following a four-and-a-half-year battle with motor neurone disease.

Burrow was just 37 and had three children under the age of eight when he announced on December 19, 2019 that he had been diagnosed with the incurable illness.

The former Leeds and Great Britain scrum-half immediately launched himself into a campaign to raise awareness of the disease and here, the PA news agency charts the progress he made until his death.

Pulling on the boots

Jamie-Jones Buchanan Testimonial – Emerald Headingley
Rob Burrow is hugged by Kevin Sinfield, left, after the testimonial match at Headingley in 2020 (Dave Howarth/PA)

Just two months after his diagnosis, Burrow pulled the boots back on for a joint benefit match with former team-mate Jamie Jones-Buchanan to start the bid to raise awareness of MND and there was hardly a dry eye among the sell-out crowd of almost 20,000 at Headingley when he went on to play the final five minutes against Bradford.

Chief guest at Wembley

He was chief guest at the 2020 Challenge Cup final at Wembley, in which his beloved Leeds gained a 17-16 win over Salford, although he was unable to attend in person due to the restrictions imposed by the coronavirus pandemic. The Rhinos players credited their victory to Burrow and fittingly the winning point was scored by Luke Gale wearing his old number seven shirt.

Recognised in the New Year Honours List

Burrow became an MBE in the 2021 New Year Honours list for his services to rugby league and the motor neurone disease community, just days after being inducted into the Leeds Hall of Fame.

A star of screen and best-selling author

Over three million tuned in to watch the award-winning BBC documentary “My Year with MND” and Burrow revealed more intimate details into his battle with the disease in his autobiography “Too Many Reasons To Live”, which was published in August 2021. It won second prize in the prestigious William Hill Sports Book of the Year awards at a ceremony in London attended by Burrow himself.

Downing Street campaigner

In September 2021, Burrow and fellow MND sufferer Stephen Darby, the former Bradford footballer, were part of a group which went to Downing Street to urge the Prime Minister to inject more cash into finding a cure. It was a bid that eventually proved successful when the Government agreed to make £50m available for research.

Back at Old Trafford

Rob Burrow, right, and St Helens centre Kevin Naiqama
Burrow presents St Helens centre Kevin Naiqama the Harry Sunderland trophy for his man-of-the-match display in the 2021 Grand Final (Zac Goodwin/PA)

Burrow was at Old Trafford in October 2021 to present the Harry Sunderland Trophy to the Grand Final man of the match, St Helens centre Kevin Naiqama, an award he had himself won on two occasions.

Still wowing the fans at Headingley

On November 23, 2021, despite being confined to a wheelchair, Burrow was back at Headingley to greet his old captain and close friend Kevin Sinfield following the completion of his latest fund-raising challenge, a gruelling 101-mile run from Leicester which put another £1m into the coffers.

Off to Windsor Castle
Accompanied by his wife Lindsey and parents Geoff and Irene, Burrow went to Windsor Castle to receive his MBE. The accolade was passed to him by Her Royal Highness Princess Anne.

Investitures at Windsor Castle
Burrow is made an MBE by the Princess Royal at Windsor Castle (Aaron Chown/PA)

Burrow Seven Racing Club begins

A charity horse racing syndicate was set up in his honour – Burrow Seven Racing Club – and was paired up with grey Burrow Seven. The syndicate raised over £175,000 for MND as a result, with Burrow Seven placing once in four starts before retiring due to injury in November 2023.

Sinfield attempts Ultra 7 in 7 Challenge

In November 2022, Burrow was at Bradford’s Valley Parade to support Sinfield on another fundraiser – the Ultra 7 in 7 Challenge. Sinfield ran seven back-to-back ultra-marathons from Edinburgh to Old Trafford and in the process generated more than £1.4m.

Sports Personality of the Year appearance

Burrow, alongside Sinfield, received the Helen Rollason Award at the 2022 BBC Sports Personality of the Year ceremony, where he paid tribute to his “MND hero” Doddie Weir, who had died the previous month.

Inaugural Rob Burrow Leeds Marathon

Rob Burrow Leeds Marathon 2023
Burrow and Sinfield cross the finish line of the 2023 Rob Burrow Leeds Marathon (Danny Lawson/PA)

In May 2023, Sinfield carried Burrow over the finish line at the inaugural Rob Burrow Leeds Marathon after pushing his great friend for the 26.2 miles.

Another royal meeting

In December 2023, Sinfield continued his remarkable fundraising efforts by running seven ultra-marathons in seven different cities in as many days. A month later, Burrow and Sinfield met the Prince of Wales at Headingley, and he congratulated the pair and made them both a CBE for services to MND awareness, which was announced in the 2024 New Year Honours.

Second Rob Burrow Leeds Marathon

His last public appearance came on May 12, 2024 during the second running of the Rob Burrow Leeds Marathon. Sinfield once again generated vital funds for MND, with wife Lindsey also completing the half-marathon.

A true inspiration

Former club Leeds Rhinos announced the death of the 41-year-old on Sunday, June 2. A statement read: “It is with deep sadness that we announce the death of our beloved son, husband, father, brother and friend. Rob has always been a true inspiration throughout his life whether that was on the rugby league field or during his battle with MND. He never allowed others to define what he could achieve and believed in his own ability to do more. The outpouring of love and support that Rob and the whole Burrow family have received over the last four and a half years meant so much to Rob.”