It’s time to end the anguish Rishi
IN 2019, a group of people affected by motor neurone disease approached the MND Association, the My Name’s Doddie Foundation and MND Scotland to discuss the funding for targeted research into the disease. They wanted more, recognising that research is their best, in fact only, hope of a treatment to save their lives.
The charities have done their best and put a great deal of their limited resources into funding and promoting research.
With that funding, over the last few years, significant steps forward in understanding have been made.
But we also acknowledge that a substantial injection of money is needed for scientists to be able to take the strides necessary to find a cure and treatments for this devastating disease.
Without that, many more people with MND will die in the coming years.
So we joined forces and, with some of the world’s leading neurologists, we established the United To End MND campaign – a powerful coalition challenging the Government to invest £50million over five years into a virtual MND Translational Research Institute.
We believe this is the quickest and most efficient way to accelerate the current promising progress our scientists are making towards the first ever meaningful treatments for this brutal condition.
There are other benefits too. this kind of institute would attract considerable investment from major pharmaceutical firms, in line with the Government’s ambition for the UK to be a “scientific superpower”.
The campaign has made huge advances in the past year, thanks to incredible support from the community and high profile supporters such as Doddie Weir, Rob Burrow and Stephen Darby – former sportsmen all living with MND.
We have also been hugely grateful for support in the media, in particular from this newspaper and BBC Breakfast.
The weekly coverage in the Sunday Express has put us firmly in the public domain – week after week the newspaper has focused on the stories at the very heart of the campaign – those of real people living every day with this brutal disease and who are desperate for the hope of a future that only research will bring.
The stories of young people, parents, carers, high-profile people and those who devastated and bereaved by MND have demonstrated that it doesn’t discriminate.
They’ve shared their pain, emotions, fears and their hope with one aim – to urge the Government to invest in research that could literally save their lives. We are grateful to them all for sharing their story.
There does seem to be a real political will to help us in this quest.
A meeting in December last year involving then Health Secretary Matt Hancock and Doddieweir was very positive.
Since then the mood music has continued to be positive but at the same time frustrating as we have continually had to challenge the Government’s considerable overestimate of spending on targeted research for MND by the Medical Research Council and National Institute for Health Research. We have done the maths. Publicly available data shows the Government has invested only up to £5million a year in targeted MND research, not the up to £15million it claims.
At meetings with ministers and officials we were advised to press for inclusion of the institute and the funding in this week’s Public Spending Review.
To that end, as this newspaper reported a few weeks ago, on September 21 we took our call for Government funding of targeted MND research direct to Number 10.
Rob Burrow and Stephen Darby delivered a letter, signed by hundreds of people with MND, to Downing Street, urging the Government to inject £50million into targeted MND research over the next five years.
They were joined by former West Midlands Police Assistant Chief Constable Chris Johnson, Nicola Waters and Emma Moss – all living with MND – and leading members of the campaigning coalition, neurologists and representatives from the three charities.
Politicians from all sides joined us on the day and we are hugely grateful for this support for our cause.
We now need the Government to listen. There are just days left until the spending review is announced.
We need the pain and anguish that people with MND and their families are going through to be recognised by the Government and for their plea for investment to support this exciting new initiative for MND research to be heard.
MND is not incurable but it is underfunded. It is time that changed. Two hundred thousand people currently alive in the UK today will develop and die from MND.
Let’s bring an end to this brutal disease.
See pages 24&25 for Sky News’s political correspondent Joe Pike’s moving account of his late husband’s battle with MND.