Rob Burrow, rugby league star and inspirational fundraiser, dies from motor neuron disease at age 41 | CNN (2024)

Rob Burrow, rugby league star and inspirational fundraiser, dies from motor neuron disease at age 41 | CNN (1)

Former rugby league star Rob Burrow died aged 41 on Sunday.

CNN

Former rugby league star Rob Burrow, whose quiet strength and relentless campaigning captured the hearts of many Britons after he was diagnosed with motor neuron disease (MND), has died aged 41, his former team Leeds Rhinos announced on Sunday.

Alongside his wife, Lindsey, and friend and former teammate Kevin Sinfield, Burrow raised almost £20 million ($25.5 million) to combat MND, including more than £6 million ($7.6 million) to build the Rob Burrow Centre for MND in Leeds, northern England, that would provide a better quality of life for those living with the degenerative disease.

There is currently no cure for MND, which eventually causes muscles to weaken, affecting a person’s ability to walk, talk, eat, drink and breathe.

Prince William, who presented Burrow and Sinfield with their CBE (Commander of the Most Excellent Order of the British Empire) honors in January, paid his own tribute to “a legend of Rugby League,” on X, formerly known as Twitter.

“Rob Burrow had a huge heart. He taught us, ‘in a world full of adversity, we must dare to dream.’ Catherine and I send our love to Lindsey, Jackson, Maya and Macy. W,” he said.

Rob Burrow, rugby league star and inspirational fundraiser, dies from motor neuron disease at age 41 | CNN (3)

Kevin Sinfield carries Rob Burrow across the marathon finish line.

Sinfield’s efforts came to epitomize the strength of friendship through adversity as he embarked on a series of increasingly difficult endurance challenges, including completing seven ultramarathons in seven days and running 101 miles in 24 hours, to raise £7 million ($8.9 million) for MND.

On the rugby pitch, Burrow accumulated a highlights reel full of arcing runs, tries seemingly conjured out of nothing and the distinctive sight of his diminutive figure unleashing dazzling footwork to elude far taller defenders.

He made 492 appearances for Leeds Rhinos, 15 for England and five for Great Britain. An integral part of Leeds’ “golden generation,” he won eight Super League Grand Finals – and was named Man of the Match on two of those occasions – two Challenge Cup finals, three World Club Challenge finals and three League Leaders Shields.

Following his MND diagnosis in 2019, when he was given two years to live, Burrow became known outside the rugby league community as he and his family decided to publicize his disease, to show its impact and to raise awareness and money.

Rob Burrow, rugby league star and inspirational fundraiser, dies from motor neuron disease at age 41 | CNN (4)

Rob Burrow, wife Lindsey (who ran the half marathon), daughters Macy and Maya and Kevin Sinfield, who ran the full marathon, all pose for a picture after the Rob Burrow Leeds Marathon.

Burrow and his wife released two documentaries, “My Year with MND” and “Living with MND,” which highlighted the day-to-day life of the devastating disease, as well as its impact on their young family.

Lindsey told her own story, too, in a documentary “Who Cares for Our Carers?” and the memoir “Take Care” that spotlighted both her own daily life juggling her job as a physiotherapist with caring for her husband, and the work of unpaid carers across the UK.

“I hope Lindsey’s book will inspire people to be more like her. What a world that would be,” Burrow said on X in May.

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. 72167901 (Press Association via AP Images) Danny Lawson/PA/AP Related article Kevin Sinfield carries friend and former teammate Rob Burrow across marathon finish line

Burrow’s remarkable bond with his family and Sinfield became more and more evident as his condition deteriorated. This was encapsulated by the moment in May 2023 when Sinfield carried his friend over the finish line of the Rob Burrow Leeds Marathon, after pushing him in a wheelchair through the city’s streets for more than four hours.

Of Burrow’s death on Sunday, Sinfield said it, “was the day that I hoped would never come.”

“The world has lost a great man and a wonderful friend to so so many. You fought so bravely until the end and became a beacon of hope and inspiration, not only for the MND community but for all those who saw and heard your story. You will continue to inspire me every single day,” Sinfield said in a statement shared by Leeds Rhinos.

“I would always say that you were pound for pound the toughest player I ever played alongside, however since your diagnosis, you were the toughest and bravest man I have ever met.”

A picture book inspired by their friendship will be released in July, with proceeds going to charity.

‘An incredible legacy’

On Sunday evening, flowers, shirts and scarves covered the ground outside Headingley Rugby Stadium, where Leeds Rhinos play, as fans left their tributes to Burrow.

Rob Burrow, rugby league star and inspirational fundraiser, dies from motor neuron disease at age 41 | CNN (6)

Members of the public pay tribute and view flowers and messages left at Headingley Stadium in Leeds.

British Prime Minister Rishi Sunak and Keir Starmer, leader of the opposition Labour Party, are currently fighting a national election campaign but both expressed their sadness at Burrow’s death.

Starmer posted on X that “Rob leaves behind an incredible legacy in his work to raise awareness and advocate for those with Motor Neurone Disease. My thoughts are with his family and friends through this time.”

Meanwhile, Sunak described Burrow as “an inspiration to everyone who met him or who heard his incredible story,” adding that he “leaves behind an amazing legacy.”

Burrow is survived by his wife, Lindsey, and their three children.

Rob Burrow, rugby league star and inspirational fundraiser, dies from motor neuron disease at age 41 | CNN (2024)

FAQs

How long has Rob Burrows been diagnosed with MND? ›

In December 2019, Burrow was diagnosed with motor neurone disease (MND). Following his diagnosis, Burrow raised awareness for MND with fellow player Kevin Sinfield. Both were awarded CBEs in 2024 because of their efforts in raising funds and awareness of the disease. Burrow died from MND on 2 June 2024, aged 41.

How do you get motor neurone disease? ›

Most cases of MND develop without an obvious cause. Around 1 in 10 cases are 'familial', meaning the condition is inherited. This is due to a genetic mutation, or an error in the gene. If you have an MND-related genetic mutation, your children have a 50/50 chance of inheriting that MND-related genetic mutation.

How long do people with MND live? ›

Life expectancy after diagnosis is one to five years, with 10 per cent of people with MND living 10 years or more. The needs of people with MND are complex and vary from person to person.

Is MND caused by rugby? ›

The paper concluded that former Scottish international rugby union players had an increased risk of developing MND compared to the general population.

What is the longest life expectancy with MND? ›

The average lifespan for duch*enne muscular dystrophy is 18 to 25 years. With early treatment, it can reach 30 years. But recent technological advances have made it possible to improve treatment. As a result, people living with the disease live better and longer.

Has anyone ever recovered from motor neurone disease? ›

There's no cure for MND, but there are treatments to help reduce the impact it has on a person's daily life. Some people live with the condition for many years. MND can significantly shorten life expectancy and, unfortunately, eventually leads to death.

What are the first warning signs of ALS? ›

Early symptoms include:
  • Muscle twitches in the arm, leg, shoulder, or tongue.
  • Muscle cramps.
  • Tight and stiff muscles (spasticity)
  • Muscle weakness affecting an arm, a leg, or the neck.
  • Slurred and nasal speech.
  • Difficulty chewing or swallowing.
Apr 10, 2024

What are the early warning signs of motor neurone disease? ›

Early symptoms can include:
  • weakness in your ankle or leg – you might trip, or find it harder to climb stairs.
  • slurred speech, which may develop into difficulty swallowing some foods.
  • a weak grip – you might drop things, or find it hard to open jars or do up buttons.
  • muscle cramps and twitches.

What is the main cause of death in MND patients? ›

The final stages of MND will usually involve gradual weakening of the breathing muscles and increasing sleepiness. This is usually the cause of death, either because of an infection or because the muscles stop working. Specialist palliative care supports quality of life through symptom control.

What celebrity has motor neurone disease? ›

Living
  • Jason Becker (born 1969), American musician, songwriter and composer.
  • Jesper Björkman (born 1993), Swedish footballer.
  • Jason Bowen (born 1972), Welsh footballer.
  • David Bradley (born 1954), American artist.
  • O. J. Brigance (born 1969), American football player.
  • Esteban Bullrich (born 1969), Argentine politician.

Why do so many sportsmen get MND? ›

Many of the 30 plus genes known to predispose to MND change in their levels of expression during intense physical exercise and individuals who have a mutation in the C9ORF72 gene, which accounts for 10 percent of MND cases, have an earlier age of disease onset if they have a lifestyle which includes high levels of ...

Who is prone to MND? ›

Typically, the longer you live, the more likely you are to develop the condition. If you have a parent with MND with no other family history of the disease, you're at a slight increased risk of MND of about 1.4%. The risk to the general population of MND is about 0.3%.

When did Rob get diagnosed with MND? ›

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

What is the longest surviving MND? ›

It may be known as the 1,000-day disease, but Hawking survived more than 20,000 days after his diagnosis. Life expectancy for people with motor neuron disease appears to be dependant on two things – the motor neurons controlling the breathing muscles in the diaphragm, and those affecting the swallowing muscles.

How far are we from a MND cure? ›

A cure for the genetic forms of MND is close, probably 3 years away, and we are hoping for a cure for the sporadic form (90% of patients) within the decade.” Judy, who has been part of the trial for 12 months, does not know if she was on the active arm of the trial or the placebo arm for the first nine months.

When was MND first diagnosed? ›

In 1869, Jean-Martin Charcot first diagnosed the disease, and began to use the term "amyotrophic lateral sclerosis" in 1874. The disease is also known as "Lou Gehrig's disease" in the United States, "Charcot's disease" in France, and "Motor Neuron Disease (MND)" in UK.

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