£50m MND research grant ‘not paid’
SCIENTISTS have not received a penny of the £50 million funding pot for motor neurone disease (MND) research promised by the UK Government, a charity has claimed.
Campaigners said that people with the disease are “running out of time” as the cash is held back by “red tape and bureaucracy”.
The concern over the whereabouts of the cash has intensified after the death on Saturday of former Scotland international Doddie Weir following a six-year battle with the disease.
UK Health Secretary Steve Barclay insisted the delay was due to the “quality of the research bids” and that the money “is there”.
But the Motor Neurone Disease Association said none of the money was in the hands of researchers.
And rugby star Kevin Sinfield said he “can’t see any reason” why scientists cannot access the cash.
The former Leeds Rhinos player has raised millions for MND charities after being inspired by Weir as well as his former Leeds Rhinos team-mate Rob Burrow and ex-bradford City captain Stephen Darby, who both live with MND.
He told BBC Breakfast: “The most important thing for someone who has been diagnosed is time and they’re running out of time. I can’t see any excuse or reason why that money has been held back.
“And if we’re going to help them make a difference and shift the dial on this disease, that money needs to be available sooner rather than later.”
Burrow also accused ministers of holding back the cash.
Dr Jane Haley MBE, Director of Research at MND Scotland, said people with MND were “understandably very angry” about funding delays.
She said the charity was continuing to work with Government to ensure the funds promised are allocated “efficiently and effectively”.
In November 2021, the Government committed at least £50m to help find new therapies, and eventually a cure, for MND, a condition in which the brain and nerves progressively degenerate.
On a visit to the Royal Marsden hospital in London, Mr Barclay said: “The funding is there, we have that funding, we’re ready to allocate it.
“The delays so far has been in terms of the quality of research bids, that has come in on MMD – it’s not an area traditionally that has had a huge amount of medical research activity.
“So we’re working with the MND community to find the best way of getting that money allocated.
“It’s not an issue of finance, the money’s available, it’s ready to allocate.
“At the same time, we want to make sure that it goes on the right research and that’s what the chief scientific adviser within the Department of Health – Professor Lucy Chappell – is actively engaged on.”
The My Name’5 Doddie Foundation has been directly funding the Euan Macdonald centre for MND research at the University of Edinburgh.
The centre is closely linked to the Anne Rowling regenerative neurological clinic which was set up in memory of Harry Potter author JK Rowling’s mother with a £15.3m donation.
The University of Edinburgh declined to comment.
Dr Brian Dickie, director of research development at the Motor Neurone Disease Association, said: “We share the frustrations of so many within the MND community that one year on from the promise of funds for targeted MND research – £50 m over five years – none of it is in the hands of researchers.
“We have had reassurances from the top of Government that the committed funds will be delivered in full – it’s developing the mechanism for researchers to access the money in the most effective and efficient way that is causing the delay.
“Along with neurologists, the people with MND who spearheaded the United To End MND campaign, and other charities – MND Scotland, My Name’5 Doddie and Lifearc – we are working closely with the Government to develop a clear and streamlined process.
“We are doing everything we can to speed up those discussions.
“People with MND don’t have time to waste.”
That money needs to be available sooner rather than later