Status Update: February 2022

It’s now almost 3 months since the UK government committed a wholly new game changing £50m investment for MND Research.

Here’s an update on the progress of the active and ongoing consultation.

Patients, along with leading researchers, government officials, ministers and the charity coalition have been working hard throughout the omicron pandemic challenges to move the project forward.

As part of the November 2021 announcement, a new MND Collaborative Partnership between the MND Association, MND Scotland, My Name’5 Doddie Foundation, the MRC, NIHR and LifeArc was formed. This partnership is currently working on a pilot proposal financed by the whole collaborative to the tune of £4.25m, the majority being funded by the charities (please note any government contribution for the pilot is separate from the £50m commitment and bears witness to the considerable influence that we patients have had by working in tandem with the charities and scientists).

It is hoped that this collaboration will become the foundation for the new research entity to receive the £50m government funding. It is designed to show how a new funding model can be implemented, operated and governed sustainably, whilst removing the burden on researchers to apply repeatedly for individual grants. It was key to our proposal submitted in 2021.

The coalition wish to see the new £50m investment set aside and drawn down efficiently through such an initiative. We are expecting an update in the next 2 weeks from government departments, the DHSC and BEIS, on the allocation of the promised funds.

The amazing new commitment will of course come with conditions and oversight. No funder of an ambitious scientific project will simply hand out cash. It will be reviewed, overseen and allocated.

In line with government vision, we see this project as a pioneering approach to streamline translational medical research, which is exactly what is required to accelerate meaningful treatments and ultimately a cure for MND.

We patients have been bowled over with how united and committed the UK scientific community is in driving towards new treatments.

Please keep our website bookmarked as we will be updating regularly on the progress of the endeavour. We will also be including a scores on the doors dashboard to show how the £50m government funds are being allocated to the new infrastructure project along with information on raising funds from other sources, including industry and charitable donations in keeping with the coalition’s “ambition” to raise a further £50m over five years for the project.

Yes, we are keeping ‘tabs‘!

Best wishes

Patientsunited2endMND