After months of campaigning, urging the UK Government to invest in targeted MND research, our call was not included in the Autumn Budget.
The United to End MND campaign coalition - led by MND Scotland, My Name'5 Doddie Foundation, MND Association, people living with MND and neurologists - has been calling on the UK Goverment to commit £50 million over five years, to fund a virtual institute for MND Research.
Just last month, the coalition delivered a personal letter from people with MND to 10 Downing Street, which stated ‘MND is a death sentence’ but that ‘research has now reached a point where a cure or life-saving treatments can be found’. It continued ‘The current piecemeal and protracted approach of funding individual projects will not deliver the life-saving treatments we need…we urgently appeal for action and investment now’.
Follow today's (Wednesday 27 October 2021) announcement of the Autumn Budget and Spending Review 2021, the coalition said:
"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."
31-year-old Jo Knowlton, from Dundee, who is living with MND, expressed her feelings at seeing no mention of MND in the budget:
"I’m completely heartbroken. The funding offered a glimmer of hope. It feels like the day I got my diagnosis all over again. Like I’m supposed to sit at home and wait patiently to die. I’m only 31 and it makes me feel like myself and everyone living with MND are not important enough. If the government felt that the amount requested was unachievable, at least come back with a counter-offer. Show us that you are dedicated to helping find treatments for this devastating disease. Show us that we matter and that it’s just as important to you as it is to us."
Rachel Maitland, MND Scotland's Chief Executive, said:
"This is extremely disappointing news for all of us, but for those living with MND I can only imagine the anger and frustration they are feeling. We have made incredible strides in MND research over the past few years and now almost every person in Scotland has access to a MND clinical drug trial. This additional investment from the UK Government would have accelerated our progress into finding effective treatments for this devastating disease.
“With over 450 people living with MND in Scotland today, around 200 will die within the next year. MND does not wait, and neither can we. MND Scotland will continue to fundraise and to fight for further investment into ground-breaking MND research. Together, we will beat MND."
Your donations have never been more important to help fund the vital MND research which is taking us closer to a cure. If you can, please donate today.
You can find out more about our United to End MND campaign here.