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“People with MND don’t have time” – Kevin Sinfield bemoans lack of progress on promised £50 million

Kevin Sinfield has admitted that there is “frustration” surrounding the slow release of promised government funds to help research and find a cure for MND, something he’s become a nation-leading advocate on after ex-Leeds Rhinos teammate Rob Burrow’s diagnosis.

Sinfield has been a voice for a community that had been ignored for too long and his incredible fundraising efforts helped raise awareness, so much so that the government were called into action.

That action saw the promise that £50 million would be awarded in funding to research and help find a cure for the currently incurable condition, highlighting Sinfield and Co’s slogan that ‘Motor Neurone Disease isn’t incurable, just underfunded’.

Speaking to the press today ahead of his upcoming challenge that will see him take on seven ultra-marathons in seven days across seven different UK cities, he did admit there was frustration at the lack of progress.

Asked about the slow progress, Sinfield responded: “Yeah, but I think that’s the modern world we live in. Everybody wants everything done yesterday. We understand how important this is because lives are at stake and we also know the statistics.

“From diagnosis 50% die within the first two years, a third die within the first 12 months, so like people with MND don’t have time on the side, we’ve got to shift this quickly.”

“As we saw with Covid, if you throw enough money at something, you can get a cure. And part of my role in this, a part of the team’s role, is to ensure that we give some fantastic minds around the medical world and research teams the right money to be able to try and find a cure and find drugs that help.

“I have mentioned the human side of the awareness, and I’ve also mentioned how we make people feel and we wrap that all up into one big ball and we’re absolutely honoured to represent this community.”

More specifically on the government assigned funds Sinfield provided an update on what had been secured, and what was still to be delivered upon.

“The last update I had was that £27 million had been delivered. I know that some of the application process was made far simpler and was condensed.

“I’m not fully across where the other £23 million is at this point, but it’s really important that that money is released as promised. It’s really important that money is used in the best possible way so that we can find a cure.”

That further undelivered £23 million is vital, as will be every pound and penny that Sinfield and his team are able to raise during the upcoming challenge, the former Rhinos captain underlining how important time is for those living with MND.

“I think it’s more the time,” he explained after having earlier revealed the daunting statistics that 50% of those diagnosed die within two years.

“People with MND don’t have time to wait. We all want things done now, we all want change now, we all want our great scientists across the UK to work together and find a cure.

“So there is some frustration, but whether that money was released or not, we’d still be here getting ready to run because that £50 million is for finding a cure and drugs to help.

“50% of what we raise we ensure goes to that human side that helps people that makes the journey a little bit better. So regardless of that £50 million we’re here.”

For information about MND and on how to donate to support Sinfield in his efforts, click here.

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