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?

Well we are very aware that our community, more than anyone, will understand the potential of this cash injection, but at the same time appreciate there is a lot of work to do both scientifically and organisationally. We will be continually updating our website so please subscribe to make sure you don’t miss an update!

But for now, we wanted to update you with some of the principles we are working to. We have written to both Sajid Javid and Kwasi Kwarteng setting these out and thanking them for their commitment and the announcement.

The #United2EndMND coalition proposal was, and is, a comprehensive work plan with clear aims, approaches and boundaries. The full document is here and the key principles/planning assumptions of the targeted research that the £50m wholly new investment, over 5 years, is intended to address are as follows….

• The new funding of £50m over 5 years will be used only for the aim of accelerating life-saving treatments for MND and will not be diluted by other aims – in line with the scientific proposal presented to Government in August 2021 by Professor Al-Chalabi and Professor McDermott (coordinating five universities and the wider MND Clinical Studies Group of 22 centres across the UK).

• There will be a single point of coordination of research focused on the overall aim above.

• This single point or body will be responsible for liaising with funding bodies and managing the application of the funds set aside for MND research.

• The body will have a governance structure that includes representation for patients and other stakeholders.

• The funding will be available UK-wide and the governance will have a UK-wide remit. 

• There will be an overall strategic programme plan guiding decision making, agreed at the outset and based on the scientific proposal above.

• Every patient will have the opportunity to contribute to a coordinated national effort through linkage between local hospitals and the main MND hubs.