The UK government’s £50m wholly new commitment to a new MND Translational Research infrastructure is an amazing funding boost. But it can only fully realise the ambitions of the MND community and researchers with the streamlining of grant application processes.
Continue reading “Single Application”
It’s now almost 3 months since the UK government committed a wholly new game changing £50m investment for MND Research.
Continue reading “Status update”
Following the news at the end of 2021 that the UK Government has committed an historic £50m over the next 5 years to targeted MND research, we thought it timely to reiterate the ground breaking research plans which underpinned our campaign.
Because of the ‘very targeted’ project aims we also feel it important to be very clear about what these specific funds will NOT be spent on.
Continue reading “The best road to a cure – the importance of following the science”
A new dawn at a special time of the year
What a year!? We are all living through historic times. But, as a community we have, during these challenging days, achieved a truly first of a kind UK government commitment.
Continue reading “A new dawn”
New investment funding principles
After the sensational news from our Prime Minister in November, the real work starts now! How is the money to be allocated? When will we know, etc?
Continue reading “Funding Principles”
November 14th, 2021, was an historic day in UK MND Research funding history. Prime minister Boris Johnson announced his support for and, more vitally, committed to investing a new £50m of funds for targeted MND research over the next 5 years.
Continue reading “Boris Commits to United2EndMND”
Back in 2014, the now legendary Ice Bucket Challenge spread around the globe raising significant funds for the MND/ALS cause. In the UK alone about £7m was donated by our very generous public in just 2 short weeks during the warm summer weather.
Continue reading “Threshold Funding”
The United To End MND campaign is calling on the government to invest £50million in targeted MND research. The following is a statement from the coalition members following the announcement of the Autumn Budget and Spending Review 2021:
Please note, this IS a disappointment, but we are confident government is taking notice and looking at ways to help us. Keep tuned here for further updates
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.
United2EndMND is a coalition of scientists, charities and patients. We have presented a detailed five year plan to the Government setting out how we can find a cure for Motor Neuron Disease and help cement the UK as a leader in this field of science. That submission is currently being considered by the Government as part of the Spending Review. We have produced the attached briefing note to explain the lack of targeted funding to date and how a modest increase in investment (alongside investment from industry) can transform the research landscape and save the lives of many thousands of people.
As you are aware, the coalition of patients, researchers and 3 MND charities (My Name5 Doddie Foundation, MND Association and MND Scotland) recently delivered a letter to Boris Johnson in support of our submission for the forthcoming spending round. Importantly, this closes on the 27th October and there is unlikely to be another review for at least 3 years. Given the average prognosis, as 5 people living with MND, we want to take advantage of this window of opportunity right now.
That’s why we’re asking if you could write to your MP ASAP, and no later than October 22nd, asking him/her to ask both Sajid Javid, Secretary of State for the DHSC, and Kwasi Kwarteng, Secretary of State for BEIS, to support our submission.
The reason we are asking you to ask your MP to write to both is because both departments fund MND research.
We have made it really easy for you, with a 3 step process
We really appreciate your efforts to ensure we give this submission to government every possible chance.
All the very best.
Chris, Dave, Emma, Lee and Nicola
We are United2EndMND - Changing the conversation