Kevin Sinfield has urged the Government to give families affected by motor neurone disease hope by investing in research to find treatments.
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 Leeds Rhinos team-mate Rob Burrow was diagnosed with the condition in December 2019.
However, Sinfield admits it will take significant public money to make the real difference, and cited the success in developing effective Covid-19 vaccinations as an example of what can happen with the right investment.
Burrow was part of a group which visited Downing Street last week calling for £50million of Government money to be ploughed into research, and Sinfield said: "In the last 30 years it's been massively underfunded and it's been almost left.
On Tuesday we handed in a petition to Downing Street asking the government for more funds for MND research. The Foundation is proud to support the #United2EndMND campaign alongside @MNDoddie5 @Rob7Burrow @mndassoc @MNDScotland Thank you for your continued support #attackMND ✊ pic.twitter.com/TbQdu6VaPN — Darby Rimmer MND Foundation (@DarbyRimmerMND) September 23, 2021
"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.
"It is a lot of money that was asked of Government recently, but it's needed – this is a terrible disease.
"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. 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.
Sinfield, 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.
His new role at Leicester has made seeing Burrow even more challenging, but Sinfield 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," 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.
"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."
