I pay tribute to the Motor Neurone Disease Association (MNDA) for the vital role it plays in funding research, providing information and support to sufferers and their families, and campaigning for improved services.

I recognise that MND research is key to finding a cure and improving treatments. The MNDA has over 30 years of involvement in funding and coordinating research. The Association makes an enormous contribution and currently supports 85 projects totalling £14.6 million. I commend and support its determination to achieve a world free from MND.

However, financial support from the Government could make a real difference in the fight against this terrible disease. If the PM wants the UK to be a scientific superpower, then this would be a great place to start.

I wrote to both Sajid Javid, the Secretary of State for the Department of Health and Social Care, and Kwasi Kwarteng, the Secretary of State for Business, Energy and Industrial Strategy, and made the case to increase research spending on MND through a virtual MND Translational Research Institute, as proposed by the MNDA.

I have now received a reply from the Minister for Technology, Innovation and Life Sciences, Lord Kamall, a copy of which I have posted below for you to see.

Sadly, the Minister did not support the Motor Neurone Disease Association’s proposal for a virtual MND Translational Research Institute. This is despite the case being made on both humanitarian and economic grounds.

The Minister has detailed some of the avenues through which the Government is funding MND research and adjacent research, however, whilst this funding is welcome, it does not provide the much needed, targeted funding that was requested.

One of the problems with the current system of research funding, for example through the Department for Health’s National Institute for Health Research (NIHR), is that funding must be bid for, through open competition, instead of being provided through steady, reliable and recurring streams. This leads to uncertain futures, un-coordinated research, and neglected areas of study.

I can assure you that I will continue to press the Government to introduce dedicated, ring-fenced MND research funding, through a Translational Research Institute, as proposed by Motor Neurone Disease Association. This research is too important to be neglected.