Tiger Kevin Sinfield is calling on the government to invest more money in motor neurone disease research following his close friend’s diagnosis.
The Leicester Tigers defence coach will run the London Marathon on Sunday to raise money for the charity, MND Association after his friend and former Leeds Rhinos teammate Rob Burrow was diagnosed with the disease in December 2019.
Sinfield admitted that despite his efforts, it would take a significant amount of public money to make a real difference.
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In a visit to Downing Street last week, the coach joined a group calling for £50 million of Government funds to be ploughed into research.
“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.”
Former Leeds Rhinos player Rob Burrow is now wheelchair-bound and uses eye recognition technology to communicate.
Since Sinfield started his new role in Leicester, seeing Burrow has been a challenge, but the friends continue to stay in touch.
“The sad thing is that I can’t pick up the phone and just speak to him anymore,” Sinfield 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.
“He has always been a fighter – he’s always been inspiring because of the size he was playing such an aggressive, physical sport.
“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.
“They’re highlighting that this is a disease where people need help and support.”
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After seeing the success of the Covid-19 vaccination development, he said with sufficient funding, “there are a lot of great minds and smart minds out there who have come up with something”.
He added: “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.”
Last year, Sinfield ran seven marathons in seven days for the MND Association, raising £2.2 million for the charity and inspiring other fundraising efforts.
Neurologists who are part of the Unite to To End MND campaign say major aspects of the disease are now understood so the next step is to begin clinical trials for specific drugs to target them.
Sinfield will join thousands of others in the London Marathon on Sunday which was cancelled last year due to the Coronavirus pandemic.
He said: “[Rob] 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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