MND Association “surprised and disappointed” with government comments

MND Association have issued a response to the government’s Secretary of State for Health and Social Care Steve Barclay after he stated the delay in the £50 million promise to fund MND research was due to the “quality of the research bids”, while admitting the money “is there”.

Following the comments, MND Association have responded: “We are surprised and disappointed with Steve Barclay’s comments about access to the £50 million promised by the Government for targeted MND research.

“We are unclear which bids the Secretary of State is referring to as our coalition partnership has only submitted one so far. This was met with glowing reviews, regarded as extremely high quality and, indeed, was funded in full, although most of those funds came from the charities involved in our coalition.

“We would welcome a face-to-face meeting with Mr Barclay to clarify this situation, enabling us to work together to ensure the funds are allocated efficiently and effectively without researchers being tied up in red tape.

“People with MND are desperate for progress and as we have always said, do not have time on their side. Time is of the essence. The support the scientists are receiving from the patient community has shaped research plans and we are all keen to see this move forward as quickly as possible.”

The only funding MND has seen has been as a result of the amazing fundraising efforts of Kevin Sinfield in support of former team-mate Rob Burrow who suffers from MND.

Leeds Rhinos’ legend Burrow has been battling the disease for three years now, having announced his diagnosis in December 2019.

Since then Burrow has lost the use of his voice and is in a wheelchair but that’s not stopped him from signing up to marathons alongside best mate Sinfield, or reading stories to the nation’s children.

His current challenge is holding the government accountable for the funding they promised for MND research, with his dad also chiming in with this post following the death of Scotland rugby legend Doddie Weir from MND on Saturday.

“COME ON GOVERNMENT – cut all ‘Red Tape’ and give the so called ‘promises’ of funding £50 million over 5 years. NO MORE DELAYS PLEASE,” tweeted Geoff.

Hopefully the wider audience surrounding Burrow and the MND community at large will see him win this battle against the government to secure funding, whilst he still battles this terrible disease.

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