MORE than half the money raised from Kevin Sinfield’s incredible feat of running seven marathons in as many days will be used to provide direct support to families affected by motor neurone disease, say the MND Association.
And more than a quarter will go towards research into the condition which affects the brain and nerves which for which there is currently no cure.
Leeds director of rugby Sinfield’s ‘7 in 7 Challenge’ in December, inspired by his old Rhinos teammate Rob Burrow, the former number seven who is living with MND, raised £2.2million for the association.
The charity has announced that £1.25million of that will be directed to frontline support services, including support for children and families as well as funding for care centres and a support hotline.
A further £655,000 will go towards further research to better understand and treat MND.
The MND Association had already committed £3million to research this year and Sinfield’s efforts in raising awareness has enabled it to invest a further £2m.
The final £300,000 of the money raised by Sinfield will go to local support services in the North of England.
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.”
MND Association chief executive Sally Light 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.”
Thanks to the heightened awareness created by Sinfield and Burrow leading to more fundraising activity, and the MND Association’s supporters’ response during the pandemic, the association has announced it will commit an extra £2 million to MND research on top of that – in addition to the £3 million already committed this year.
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.”