Andrew Lewer column: Delighted Northampton charity gets £50 million boost to tackle Motor Neurone Disease

As a result of that meeting, I agreed to join the All Party Parliamentary Group for MND. Since then, I have been heavily involved in all things MND and I am now the group’s chairman.

For those who do not know, Motor Neurone Disease is a devastating, progressive, neurological disease that has no known cure. It is terminal.

A third of those diagnosed die within a year and half within two years. It is a cruel, unforgiving condition that progressively robs you of your physical function and it affects one in 300 people in this country.

The courage and tenacity of those with MND, like my constituent and tireless campaigner Emma Moss, is awe inspiring. Emma has been working with me on a number of campaigns. Incredibly we have won two very important victories that improve services and give hope to those with MND.

The first was the ‘Scrap Six Months’ campaign, where we successfully argued with the Department of Works and Pensions that people with MND could access fast-tracked benefits without having to wait until a diagnosis of six months or less to live.

But last Sunday, we won an even bigger, more significant victory with our ‘United to End MND’ campaign with the announcement that the Government would fund £50 million over five years towards the establishment of a specific Motor Neurone Disease Research Institute to try to find a cure.

The Covid-19 crisis demonstrated that our life sciences industry here in the UK – and in particular, our genetic research capability – is genuinely world class and this funding will accelerate and boost the great work and discoveries our scientists have made thus far.

Leading neurologists have said that doubling this amount under the organisation of a virtual institute would mean effective treatments, and a cure, could be found in five to 10 years, as opposed to decades, giving hope to thousands.