Health secretary Steve Barclay pledges to release £50m for MND research after delays

The money will fund research into MND. Credit: PA Images

The government has pledged to "fast-track" £50million for motor neurone disease (MND) research after criticism that it was stalling on its promise of funding.

Campaigners, including the family of rugby league legend Rob Burrow, who has MND, have spoken out about delays in providing money promised by former Prime Minister Boris Johnson more than a year ago.

But health secretary Steve Barclay said he was committed to delivering on the pledge.

He said: "Motor neurone disease can have a devastating impact on people’s lives, and I’m determined to help accelerate research to find a cure and develop innovative treatments.

"We’ve already invested millions to improve treatments and our understanding of this condition but there’s more we can do and that’s why I’m now slashing red tape to fast-track funding and ensure it reaches frontline researchers more quickly."

Rob Burrow calls for more MND funding after death of Doddie Weir

The campaign to improve research into MND, a degenerative condition affecting the brain and nerves, has grown after several high-profile sportsmen were diagnosed in recent years.

Last year the then Prime Minister Boris Johnson committed to investing in the search for new therapies for the condition.

But the Department of Health and Social Care was accused of withholding the research funding following the death of former Scotland rugby international Doddie Weir in November.

Former British and Irish Lion and Scotland rugby international Doddie Weir died from MND in November. Credit: PA

The Motor Neurone Disease Association said none of the money had been released to researchers.

Former rugby league player and fundraiser Kevin Sinfield – Burrow's ex-teammate at Leeds Rhinos – questioned why scientists could not access funding. Burrow himself accused ministers of holding back the cash.

"How many more warriors die before this stupid government give the £50million they said they would give?" Burrow said on Twitter.

'Not a penny': Sinfield calls out government over £50m MND pledge
Former Leeds Rhinos team mates Rob Burrow and Kevin Sinfield have been vocal MND campaigners since Burrow's diagnosis in 2019. Credit: PA

Announcing the funding, Mr Barclay paid tribute to Sinfield, who recently raised more than £1million by running seven ultra marathons in seven days in the latest of a series of endurance feats.

The United to End MND campaign, which includes the MND Association, MND Scotland, My Name’5 Doddie Foundation and LifeArc, welcomed the announcement but said it fell short of the money needed for a national research institute.

Site of new Rob Burrow MND centre revealed as work begins

A spokeswoman said: "Our ideal scenario remains the same – to create a national MND research institute, as exists for many other diseases.

"While Mr Barclay’s plans stop short of that, they are a step forward and demonstrate a more streamlined approach to ensuring the funds reaching MND researchers.

"Although this roadmap gives us a reason to be cautiously optimistic, we would still like more clarity and to understand the detail, processes and timelines behind it. We’d welcome the chance to discuss the questions we have with Mr Barclay.

"And, of course, the MND community don’t have time to wait – over a third of people with MND die within a year of diagnosis. They need transparency, they need red tape removed, they need research to deliver treatments and ultimately a cure – fast."

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