Our response to the Government Spending Review

The United To End MND campaign is calling on the Government to invest £50 million in targeted MND research. The following is a statement from the coalition members following the announcement of the Autumn Budget and Spending Review 2021:

We are disappointed that our submission to the spending review for a £50 million investment over five years into a virtual MND Translational Research Institute was not accepted. We believe this would have been the quickest and most efficient way to accelerate the current promising progress that our scientists are making towards the first-ever meaningful treatments for this brutal condition. It would have attracted considerable investment into the UK from the major pharmaceutical companies, in line with the Government's ambition for the UK to be a "scientific superpower".

We continue to challenge the Government's considerable overestimation of spending on targeted research for MND via BEIS/MRC and DHSC/NIHR. It is only through a thorough examination of the publicly available data that Ministers and their advisers will come to an understanding of the current low funding of around £5 million per year as opposed to the claims of around £15 million.

A positive response would have offered hope to thousands in the UK who are affected by MND, whether as a patient, family member or friend.

However, we are encouraged by the continuing statements made by the Prime Minister, his Ministers, MPs and their advisers which suggest that they really are seeking ways to solve our issue which, essentially, is that current Government funding mechanisms are too fragmented, inefficient and simply do not work for the current status of MND research.

We are calling for an immediate renewed focus on these efforts. We simply cannot wait for the 200,000+ people alive in the UK today, yet to be diagnosed, who WILL die from MND without meaningful treatments and ultimately a cure.

My Name’5 Doddie Foundation CEO, Jill Douglas:

“After encouraging conversations with Government ministers and officials, we are obviously disappointed that our submission for a £50 million investment over five years has not been included in the Spending Review. We have all worked so hard in recent months to demonstrate how a translational Research Institute could deliver for the MND community - sadly our voices have not been heard. But we are determined, as a Foundation and as a coalition, to press ahead and continue to ensure that vital research is funded, and work with Government funding bodies to look at how we can give hope to people living with MND - the current funding system is not working and something needs to change.”

My Name’5 Doddie Foundation Medical Strategy Lead, Sean McGrath:

“Whilst we are certainly frustrated by the lack of news, we will continue to engage positively with Government and their various research institutions. The MND research community has an ambitious list of scientific programmes waiting to get started, all we are waiting for is the commitment from Government that they play their modest part in co-funding these efforts along withourselves, other charities and industry"

Professor Ammar Al-Chalabi:

Motor neuron disease is a devastating condition that can affect anyone and will kill 1 in every 300 people. The UK has some of the world’s foremost researchers trying to find a cure. We will continue to work with the Government and funding agencies to ensure we maintain our world-leading position. Our United To End MND Coalition will continue to fight for a UK MND Translational Research Institute, able to accelerate the search for a cure for MND.

MND Association Chief Executive, Sally Light:

We are so disappointed on behalf of everyone in the MND community that the Government hasn’t listened to our plea to invest £50million in targeted MND research. Our researchers are on the cusp of a breakthrough in discovering treatments for MND. But they need a meaningful injection of funding. We will continue to do what we can as a charity but we will also continue to fight for the investment that will give hope to the 5,000 people in the UK who are living with this brutal disease right now.

Campaigner and mum of one, Emma Moss:

Can the Government provide any reasonable excuse for not wanting to accelerate research in to a terminal illness that kills thousands of UK citizens every year? Current targeted funding is very poor and the outcome bleak for hundreds of thousands more people if the UK Government fails to act now.

My four year old daughter doesn't yet know that her Mummy is dying. Who would like to tell her because it isn't something that I am prepared to do.

Give us the increased funding. Give us a chance to live.

Campaigner and mum of two, Nicola Waters:

We need actions not words from the Government - all we are asking for is £10m a year. There are many young parents who face having to leave their children in the most distressing way. This is unacceptable when a cure is within reach. The time is now!