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.
Our response to Health and Social Care Secretary Steve Barclay's comments about the £50 million promised by @GOVUK for #MND research.
𝐅𝐮𝐥𝐥 𝐬𝐭𝐚𝐭𝐞𝐦𝐞𝐧𝐭: https://t.co/OiaTnr08Eq
We are #United2EndMND. pic.twitter.com/LsBIgmp8Ac
— MND Association (@mndassoc) December 1, 2022
“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.
SO SAD to hear about Rugby Legend Doddle Weir 💙 a true champion and such a lovely kind human being RIP Doddle 🙏 SO NOW COME ON GOVERNMENT – cut all “Red Tape” 😳and give the so called “promises” of funding of £50 million over 5 years. NO MORE DELAYS PLEASE 🙏
— Geoff Burrow (@burrow_geoff) November 26, 2022
“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.
Time to stop playing politics @RishiSunak @SteveBarclay and deliver on your promise. How can you as leaders of our Country make promises and not deliver on them? How can you look on the mirror on a subject like this? @mndassoc @sallynugent @MNDoddie5 https://t.co/KHdg5SVpJ1
— Martin Wolstencroft (@wullybull) December 1, 2022
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.
MND Association "surprised and disappointed" with government comments – Serious About Rugby League
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