Leeds Rhinos legend Kevin Sinfield repeats call for MND urgency as he prepares for latest epic challenge

The MND community was offered fresh hope in the battle to find a cure for the terminal illness in the shape of a £50million pledge.

However, two years on, the full amount has yet to materialise.

"The last update I had was that £27m had been delivered," said Sinfield.

"I'm not fully across where the other £23m is at this point but it's really important 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.

"As we saw with Covid, if you throw money at something you can get a cure."

In response, a Department of Health and Social Care spokesperson stated that almost £37m of the £50million commitment had been allocated to researchers.

For the remainder, researchers are being encouraged to apply for funding via open call.

Leeds Rhinos legend Sinfield and his team have raised £8m for MND charities after completing three daring feats of endurance in consecutive years from 2020.

As he prepares to embark on another series of seven back-to-back ultra-marathons, Sinfield has expressed his frustration over a perceived lack of urgency.

"People with MND don't have time to wait,” he said.

"We all want change now and for our great scientists in the UK to work together to find a cure.

"There is some frustration but whether that money was released or not, we'd still be here getting ready to run.

"That £50m is for finding a cure and drugs to help. Fifty per cent of what we raise will go to that human side to make the journey a little bit better.

"Regardless of that £50m, we're here."

The funds that have been delivered are being put to good use but Sinfield has stressed the importance of speeding up the whole process.

"It has been utilised in the best possible way so far," he added.

"The frustration again is how difficult it is to get drugs licensed through trials.

"Fifty per cent of the MND community die within two years. A drug trial normally takes a period of time so unfortunately we lose some of those guys who are on trials. It makes it difficult.

"Like everyone else, I want a cure now and that's why myself and the team are doing what we're doing. It's going to be really important."

Sinfield appeared to have hung up his running shoes after finishing last year's ultra-marathon challenge on the pitch at half-time during the men’s World Cup final between Australia and New Zealand at Old Trafford.

The 43-year-old has signed up for his fourth and most demanding challenge yet in aid of MND sufferers, including former Rhinos team-mate Rob Burrow who was diagnosed in 2019.

Sinfield and his team will aim to run an ultra-marathon in under four hours every day for seven days in seven cities around Great Britain and Ireland.

Starting on December 1 – the third anniversary of the first 7 in 7 challenge – the group will run from AMT Headingley to York Minster before heading to Cardiff, Birmingham, Edinburgh, Dublin, Brighton and London.

Sinfield has vowed to never stop raising awareness for Burrow and his fellow MND sufferers.

"He thinks I’m crackers but fully gets it," said Sinfield. "He’s with us 100 per cent in spirit and will be there at the start and the finish.

"Rob has handled it so courageously, as has the whole Burrow family. I've only ever seen Rob upset twice since his diagnosis. He's an incredible guy.

"If Rob is going to fight and show me what living looks like, I'm going to be shoulder to shoulder with him doing everything I can. Our team feels exactly the same as me.

"There will come a point when I can’t do this anymore and that’s fine – but I will find another way of banging the drum."

The government has been approached for comment about Sinfield’s concerns.