MND research to receive multi-million cash injection, thanks to Kevin Sinfield and the MND Association

MND research is to receive a £5.7 million funding investment from the Motor Neurone Disease Association, including a cash boost from Leeds Rhinos’ Kevin Sinfield’s marathon challenge.

Kevin’s 7 in 7 Challenge last December, inspired by team mate Rob Burrow who is living with MND, raised £2.2 million for the charity. Following discussions about the most impactful way to spend the money to benefit people with and affected by MND, the fundraising pot will be channelled into six areas of the Association’s work, spanning up to three years. Around 40% will be spent on new projects.

Frontline support services – £1,250,000

  1. 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   
  2. 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 

3.      MND Connect helpline

Local support – £300,000

4.      Our regional team in the north – supporting people affected by MND

Research – £655,000

  1. Helping more MND services get involved in research so more people with MND can take part in clinical trials
  2. Funding research into potential treatments for MND from drug discovery and development through to clinical trials

Kevin 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’s 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.” 

Around a quarter of the money raised by Kevin’s Challenge is being poured into research. Thanks to the heightened awareness created by Kevin and Rob leading to more fundraising activity, and the MND Association’s supporters’ incredible response during the pandemic, the Association has announced it will commit an extra £2 million to MND research on top of that – and that’s in addition to the £3 million already committed this year. 

Sally said: “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.”

You can listen to Kevin talking about his work with the Association on the first episode of our new podcast – MND Matters. Find out more on the website