Leeds Rhinos legend Kevin Sinfield's 7 in 7 challenge - here's how the £2.2m raised will be spent in battle against MND

The Motor Neurone Disease Association (MNDA) has today revealed how the massive £2.2m raised through Leeds Rhinos legend Kevin Sinfield's 7 in 7 challenge will be spent.

Kevin Sinfield greets Rob Burrow and family during the fifth of his seven marathons. Picture by Allan McKenzie/SWpix.com.

The former Rhinos captain, now the club’s director of rugby, ran seven marathons in seven days last December - a year after Burrow was diagnosed with the disease - to raise funds for the association and increase awareness of the illness.

The initial target was £77,777, but Sinfield’s feat captured the heart of the nation’ and the final total raised was £2,2m.

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The MNDA today revealed the six areas of its work which will receive a cash boost from Sinfield’s fund-raising and pledged an additional £2m to research on top of that, in addition to £3 million already committed this year.

The money raised by Sinfield will go to:

Frontline support services - £1,250,000.

One - Children and families scoping and pilot work: people affected by MND will be involved in shaping plans to broaden the association’s approach to supporting children, young people and families.

Two - Care Centre Network: the MND Association supports 22 care centres and networks across England, Wales and Northern Ireland. This investment will ensure local, multi-disciplinary support for people with MND continues.

Three - MND Connect helpline.

Local support - £300,000

Four - the association’s regional team in the north, supporting people affected by MND

Research - £655,000

Five Helping more MND services get involved in research so more people with MND can take part in clinical trials

Six - Funding research into potential treatments for MND from drug discovery and development through to clinical trials

“Sinfield said: The MND Association has been absolutely wonderful; the support, the knowledge, the ability to educate our team has really helped us put a plan together.

“You can go into this blind, there's all that money and, in effect, we were happy to hand it over and say ‘you spend it where it's needed’, but we felt it was really important that we understood where the money was being used and then ultimately Rob and his family were key to the journey too.

“It was really important to us that they were happy with it as well because they've lived it, they understand the challenges of living with MND and if there was anything we had missed or there areas that between us we felt needed extra support, then we ensured we had it covered off.”

Sally Light, the MND Association’s chief executive, said: Kevin was impressed by the breadth of the work we undertake and was particularly keen to support those services which have benefited Rob and his family – having seen first-hand the positive impact of those.

“This money will make such a real difference not only now but into the future as we use it to explore new ways of providing support and driving research.”

Light added: “We, as a community, are impatient to find treatments for MND.

“This extra funding for MND research is a demonstration of our commitment as an association to see that happen - and of course our work with other MND charities lobbying the government to follow our lead and invest in targeted MND research will continue.”