Time to End the Anguish and Fund Research into Motor Neuron Disease, Says MND Charity | Express commentary | Comment

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Charities have done their best and have devoted much of their limited resources to funding and promoting research. With this funding, in recent years, significant advances in understanding have been made.

But we also recognize that a substantial cash injection is needed for scientists to make the progress needed to find a cure and treatments for this devastating disease.

Without it, many more people with MND will die in the years to come.

So we joined forces and, along with some of the world’s leading neurologists, we created the United To End MND Campaign, a powerful coalition challenging the government to invest £ 50million over five years in an institute of virtual MND translational research.

We believe this is the fastest and most effective way to accelerate our scientists’ current promising progress towards the very first significant treatments for this brutal disease.

There are also other advantages. This type of institute would attract considerable investment from large pharmaceutical companies, in line with the government’s ambition to make the UK a ‘science superpower’.

The campaign has made tremendous progress over the past year, thanks to the incredible support of the community and high profile supporters such as Doddie Weir, Rob Burrow and Stephen Darby, former athletes all living with MND.

We were also extremely grateful for the support of the media, especially this newspaper and BBC Breakfast.

The Sunday Express’s weekly coverage put us firmly in the public domain – week after week the newspaper focused on the stories at the heart of the campaign – those of real people living with this brutal disease every day and who desperately needed it. need the hope of a future that only research will bring.

The stories of young people, parents, caregivers, personalities and those who have been devastated and bereaved by the MND have shown that it does not discriminate.

They shared their pain, their emotions, their fears and their hope for one purpose: to urge the government to invest in research that could literally save their lives. We thank them all for sharing their stories.

It seems that there is a real political will to help us in this quest.

A meeting in December last year involving Health Secretary Matt Hancock and Doddie Weir was very positive.

Since then, the background music has continued to be positive but at the same time frustrating, as we have continually had to challenge the government’s massive overestimation of spending on targeted research for MND by the Medical Research Council and the Institute. national health research.

We did the math. Publicly available data shows the government has only invested £ 5million a year in targeted MND research, not the £ 15million it claims.

In meetings with ministers and officials, we were advised to push for the inclusion of the institute and its funding in this week’s public expenditure review.

To that end, as this newspaper reported a few weeks ago, on September 21, we took our appeal for government funding of targeted MND research directly 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 Deputy Chief Constable Chris Johnson, Nicola Waters and Emma Moss – all living with the MND – and leading members of the militant coalition, neurologists and representatives from the three organizations. charities.

Politicians from all walks of life joined us on this day and we are extremely grateful for this support for our cause.

Now we need the government to listen. There are only a few days until the expenditure review announcement.

We need the pain and anguish that people with NDD and their families go through to be recognized by the government and their plea for investment to support this exciting new NDD research initiative to be heard.

The MND is not incurable but it is underfunded. It is time for that to change. Two hundred thousand people currently alive in the UK today will develop and die from MND.

Let’s put an end to this brutal disease.

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