Kevin Sinfield urges Government to give MND families hope as he prepares for London Marathon
The Leicester defence coach will run in Sunday's London Marathon to raise funds for the MND Association, a cause close to his heart after his friend and former Rhinos team-mate Rob Burrow was diagnosed with the condition in December 2019.
Rob Burrow was part of a group which visited Downing Street last week calling for £50million of Government money to be ploughed into research.
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Hide AdKevin said: "In the last 30 years it's been massively underfunded and it's been almost left.
"A lot of people have fought and suffered and struggled, but over that time they have had no hope. For all of us that have been involved, we want to give that hope to Rob and to everybody else across the UK and worldwide at the minute who's suffering.
"What we have seen over the last 18, 20 months since Covid first struck, how quickly we found a vaccine.
"If you throw enough money at something, there are a lot of great minds and smart minds out there who have come up with something.
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Hide Ad"The only way you can get that is by raising funds and by putting an amount of cash towards that research.
"We'll continue to do what we do, but as you can see, with something that's been so underfunded for the last 30 years, we're just scratching the surface, and people don't have that time."
Neurologists involved in the Unite To End MND campaign say the point has been reached where the major aspects of the disease are understood, so the next task is to target these pathways with specific drugs in clinical trials without delay.
Kevin, who ran seven marathons in seven days for the MND Association last year, has raised an astonishing £2.2m for the charity and inspired others in their own fundraising efforts.
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Hide AdHis new role at Leicester has made seeing Rob even more challenging, but Kevin says he still calls in on his friend every two to three weeks and swaps texts every week.
"The sad thing is that I can't pick up the phone and just speak to him anymore," he said.
"That form of communication has gone, so you try and make the best of it. But every time I do see him he's got a big smile on his face.
"When I see how brave he has been, how brave his wife Lindsey has been, the kids and his mum and dad, they have opened up and tried to show people that for families affected by MND you don't have to be ashamed, you don't need to be embarrassed and you don't have to hide away.
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Hide Ad"They're highlighting that this is a disease where people need help and support.
"He thinks it's hilarious that we're all running about after him. I absolutely know he'd do it for us and I am absolutely proud to wear the vest."
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