What is motor neurone disease? What are the symptoms and how did Rob Burrow and Doddie Weir fund research?

Rugby league legend Rob Burrow has died due to motor neurone disease (MND), but not before raising awareness of the disease and channelling millions into finding a cure.

Well-wishers have gathered outside Headingley Stadium in Yorkshire, the home of his team Leeds Rhinos, on Monday morning to pay their respects, laying flowers, scarves and other tributes.

But what is MND – the cause of Burrows’ death – and what are the early signs and the research being carried out in a bid to better understand the disease?

Rob Burrow was diagnosed with motor neurone disease in 2019. Image: George Wood/Getty Images

What is MND?

It is a life-shortening neurological disease that affects the nerves that control movement, so muscles no longer work, according to the MND Association. The charity says these nerves – motor neurones – control muscle activity such as walking, speaking and swallowing.

But as the muscles are attacked, the brain’s messages gradually stop reaching those parts of the body, leading to weakness and wasting, followed by breathing difficulties. The MND Association says some people also experience changes to their thinking and behaviour.

What are the early signs of MND?

The NHS says MND symptoms occur gradually, so may not be obvious at first.

Early symptoms include weakness in ankles or legs, slurred speech, difficulty swallowing food, a weak grip, muscle cramps and twitches and weight loss.

How is MND treated and can it be cured?

There is no cure for MND and the disease will progress over time, according to the MND Association.

How long people live with the condition varies, but some survive for years and even decades. Professor Stephen Hawking lived for more than 50 years after being diagnosed at the age of 21.

MND can be treated with occupational therapy, physiotherapy, a medicine called riluzole and medication to relieve muscle stiffness and help with saliva problems, the NHS said.

Who does the condition affect?

According to the MND Association, up to 5,000 adults in the UK have the disease at any one time. The organisation says MND can affect any adult at any age, but it is more likely to occur in people over the age of 50.

What causes MND?

The health service says the disease is caused by a problem with cells in the brain and motor neurones. It is not known why these cells and neurones gradually stop working over time.

The NHS says having a close relative with MND, or a related condition called frontotemporal dementia, can sometimes mean you are more likely to get it, but in most cases it does not run in families.

Are rugby players more at risk of MND?

In 2022, a study led by the University of Glasgow found evidence of a considerably increased risk of the degenerative disease among former rugby players.

The research, published in the Journal of Neurology Neurosurgery & Psychiatry, compared health outcomes among 412 male former internationals and more than 1,200 matched individuals from the general population.

It found ex-rugby players had more than twice the risk of a neurodegenerative disease, and a 15-times higher risk of an MND diagnosis. The study prompted calls for the elimination of contact training and a reduction in the global rugby calendar.

Which rugby players have been diagnosed with the disease?

Gloucester lock Ed Slater announced in 2022 that he would be retiring at the age of 34 after being diagnosed with MND.

Scottish rugby international Doddie Weir died in 2022, at the age of 52, after being diagnosed in December 2016. The late South African scrum half Joost van der Westhuizen died in 2017 after it was announced he had the disease in 2011.

How did Rob Burrow and Doddie Weir raise awareness of MND and fund research?

Burrow was diagnosed with the degenerative disease barely two years after ending his stellar playing career, but refused to give up the fight and threw himself into a campaign to raise awareness of the condition and help raise funds to find a cure.

The rugby all-time great had many moving moments over his four-and-a-half year campaign, including his former Leeds Rhinos teammate Kevin Sinfield carrying him over the finish line at the inaugural Rob Burrow Leeds Marathon in May last year, after pushing his great friend for the 26.2 miles.

Burrow made the health announcement aged 37 on December 19, 2019. Within a month, the former sportsman had played the final five minutes of a benefit match at Headingley to an emotional crowd of almost 20,000 people.

By the summer of 2020, he had lost his voice and began to type answers to questions with his eye-gaze machine, which used his voice from old rugby interviews.

In October of that year, a moving BBC documentary aired, Rob Burrow – My Year With MND, in which he declared: “I have too many reasons to live. I’m not giving in until my last breath.”

In September 2021, Burrow and fellow MND sufferer Stephen Darby, the former Bradford footballer, were part of a group that went to Downing Street to urge the Prime Minister to inject more money into finding a cure.

It was a bid that eventually proved successful when the government agreed to make £50 million available for research.

Burrow’s philanthropy followed in the footsteps of another rugby great, former Scotland international Doddie Weir, who also threw himself into raising awareness of MND following his diagnosis.

Weir’s charity, the My Name’5 Doddie Foundation, is investing in “cutting-edge translational research”, collaborating with “all those who share our vision”, to influence the research agenda.

“We continue to build on our strong foundations, working with a sense of controlled urgency to expedite the development of new treatments and ultimately a cure,” the charity says.

Since its formation in 2017, the foundation has invested more than £11m in a targeted portfolio of MND research to expedite the development of new treatments.

It is funding research on a possible link between exercise and MND, a possible traumatic brain injury link, and developing a novel cell therapy approach to restore lost muscle function in patients.