United to End MND Funding Announcement

Today (12th December 2022) the UK government announced it will accelerate funding for MND research to help find a cure.

Following the announcement, the below statement is from the MND charities (MND Association, My Name’5 Doddie Foundation and MND Scotland) and LifeArc on behalf of the United To End MND coalition which also includes people with MND, clinicians and researchers:

“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 Jane Haley, MND Scotland’s Director of Research, said: “We very much welcome Steve Barclay’s willingness to listen to the MND patient campaigners, researchers, and charities who are united in their desire for a UK-wide virtual research institute focused on identifying new treatments for MND. Although we were hoping for a simpler means of release of the promised £50 million from the government, this is a positive step forward and we hope it results in immediate availability of funds to key research projects across the UK, including in Scotland.”