United to End MND: The work continues
December 2022 update
The Government has today (Monday 12 December) announced it will accelerate distribution of the £50 million it pledged to invest in targeted MND research last year.
Secretary of State for Health and Social Care Steve Barclay revealed a plan to ensure £29.5 million of the funding was available for MND research in the coming months.
The below statement is from the United to End MND campaign, including people with MND, researchers and charities – MND Association, MND Scotland, My Name'5 Doddie Foundation and LifeArc.
"We are pleased that Steve Barclay has listened to the MND community and now outlined how the long-awaited £50 million investment in targeted MND research funding pledged by the Government will be made available to researchers.
Our ideal scenario remains the same - to create a national MND research institute, as exists for many other diseases.
While Mr Barclay's plans stop short of that, they are a step forward and demonstrate a more streamlined approach to ensuring the funds reaching MND researchers. Although this roadmap gives us a reason to be cautiously optimistic, we would still like more clarity and to understand the detail, processes and timelines behind it. We’d welcome the chance to discuss the questions we have with Mr Barclay.
Getting to this point has taken a huge collective effort by people with MND, the MND scientific community and MND charities to impress how urgent and important dedicated MND funding is, upon the Government.
Already this coalition has resulted in money being used to kickstart work we believe is the springboard to meaningful partnerships and collaborations and the key to speeding up vital research. Now the mechanisms are in place for the Government investment to be accessed more efficiently, we expect that work to gain pace.
And, of course, the MND community don't have time to wait – over a third of people with MND die within a year of diagnosis. They need transparency, they need red tape removed, they need research to deliver treatments and ultimately a cure - fast."
Dr Brian Dickie, Director of Research Development at the MND Association said:
"While this news from the Health Secretary does not entirely simplify the process for MND researchers to access the funding, it does provide some much-needed clarity and we recognise that concessions have been made to remove some of the red tape. We appreciate this positive step forward and thank Mr Barclay for listening to the campaigners who have been urging Government to remove bureaucracy.
"Of course, our hope is that this money, in combination with continued investment from the MND Association and others, will further speed up research on the development of effective treatments for MND. What we, and the entire MND community want, is to see more of that translational research – the work that takes potential treatments from laboratories into clinics."