'People are dying': Kevin Sinfield calls on government to show urgency as wait for £50m pledge goes on

The MND community was offered fresh hope when the commitment was made last November but the funding has yet to materialise.

Leeds Rhinos legend Sinfield has continued to go above and beyond in his quest to support MND sufferers, including former team-mate Rob Burrow.

The 42-year-old is recovering from the latest of three gruelling challenges which saw him run seven back-to-back ultra-marathons.

In excess of £2m has been raised to take the total figure beyond £7m, the bulk of which has been donated to the MND Association and Leeds Hospitals Charity’s appeal to build the Rob Burrow Centre for MND in Leeds.

Funds will also go to MND Scotland, My Name’5 Doddie Foundation, the Darby Rimmer MND Foundation and the 4ED campaign, in support of former Gloucester and Leicester rugby player Ed Slater who was recently diagnosed with the disease.

During a press conference on Thursday, Sinfield urged the government to hand over the money for targeted MND research.

"I do understand with anything like this that there is an element of red tape and bureaucracy that needs to happen," he said. "They need to understand how this money is going to be spent.

"But then I look at some of the other ways this government has spent money over the last couple of years and I don't think it's been scrutinised like this has been scrutinised.

"At the minute, not a penny has crossed over. That's the bit I don't understand and the bit that disappoints me.

"There's people dying and people getting diagnosed across the UK in particular. Families are being ravaged and being left. That's just not right.

"I can't see any valid reason, there isn't a reason as to why that money is being held back.

"I know it wasn't held back during Covid and rightly so. They threw a lot of money at different things but it's really important that this £50million passes across and that the scientists across the UK collaborate to shift the dial and move this forward."

While the MND community awaits the much-needed funding in the hope of securing a brighter future, Sinfield continues to support those already suffering.

"The driver for us it to try to help families and people who have motor neurone disease," he added.

"The £50million is for research. There's nothing in that £50million that helps families or funds call centres that give advice.

"There's nothing in there that gives people communication devices to speak to their families. There's nothing in there for kitchen utensils. There's nothing in there to make house adjustments.

"There's nothing in there to make sure families are supported properly through counselling and emotional support.

"That's some of what we've tried to support because that part is so important too."