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United to End MND Funding Announcement

12 December 2022

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

A statement 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.”

Sean McGrath, Medical Strategy Lead at My Name’5 Doddie Foundation added: "We welcome this encouraging news from the government and are grateful that the Herculean efforts from our coalition of patients, researchers and charities are bearing some fruit.

"We know Doddie would be proud, but also wouldn’t want us to rest on our laurels. Whilst this announcement initially eases the pressure on the researchers to apply for the funds and enables them to focus on their research, we recognise that ongoing communication with government agencies will be essential to ensure that this money is made available where it’s needed, and quickly. People living with MND do not have time on their side, so we look forward to continuing our dialogue with the government to accelerate this critical research”.

United to End MND Funding Announcement
United to End MND Funding Announcement

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