The best road to a cure – the importance of following the science

The best road to a cure – the importance of following the science

Continue reading “The best road to a cure – the importance of following the science”

Threshold Funding

Bringing hope to MND patients – the changing status of research and how threshold funding will make a difference

Continue reading “Threshold Funding”

Budget statement

Statement from PatientsUnited2EndMND following the Budget 27/10/21

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.

Why is a new funding model needed?

Spending Review Action

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

  1. Look up your MP’s email address – make a note of it.
  1. Choose a letter template – Don’t forget to add your name and address at the bottom to prove you are a constituent and why not even personalise!

    Choose between
  1. Simply copy and paste into your email app of choice and click send!

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

United2EndMND Presents to parliament

Our Parliament Visit

United2EndMND visited parliament on the 21st September to deliver an open letter as part of the #United2EndMND Campaign for a £50m boost for targeted MND Research.

Yours – PatientsUnited2EndMND