The First Minister pledged to meet Mark Sommerville, who was diagnosed with MND in October 2023 and told he had just 18 months to live.
John Swinney has vowed to meet a campaigning dad living with motor neurone disease who is determined to help find a cure.
The First Minister pledged to meet Mark Sommerville, who was diagnosed with MND in October 2023 and told he had just 18 months to live.
The father-of-four, from Uddingston, Lanarkshire, has since set up the Mark Sommerville Foundation to campaign for greater research funding and support for those living with the life-limiting disease.
Swinney’s comments came in response to a question raised by SNP MSP Stephen Bonar during First Minister’s Questions last week.
He said: “My constituent, Mark Sommerville, was diagnosed with motor neurone disease in 2023, a rapidly progressive and cruel illness which, for Mark and so many others, means they simply do not have time to wait for slow-moving systems and delayed decisions.
“Our manifesto made welcome commitments on MND, but progress in terms of specialist care and support for clinical research demands meaningful focus as soon as possible.
“So can the First Minister outline what he will do to ensure progress is made, and will he meet with the Mark Sommerville Foundation and hear directly about the challenges being faced, and the promising work the foundation is already undertaking to support those living with motor neurone disease?”
Agreeing to meet Mark, Swinney said: “I’d be very happy to meet with the Mark Sommerville Foundation, and the Health Secretary will also take a keen interest in this issue, so I welcome very much the points that have been raised by Stephen Bonar.
“It is vital that where individuals have a diagnosis as challenging and as devastating as motor neurone disease, that we have in place the support services and assistance to aid those individuals and their families as quickly as possible.
“The government is trying to ensure that, through the funding we’ve put in place via the NHS Research Scotland Neuroprogressive Disease Network, we will be able to provide enhanced levels of support.
“Some of the learning from the Mark Sommerville Foundation will also be helpful to us in advancing these issues.”
Last month, we revealed how Mark met officials from the Department of Health and Social Care, alongside Glasgow MP Dr Zubir Ahmed, to call for new drugs to be brought to market.
Mark, 45, said: “Those with MND don’t have time to wait. We need help now.”
Mark has teamed up with Tony Lockett and Andy Whiting from biotech firm Nevrargenics, who are behind a drug they believe can not only halt the progression of MND but reverse damage already caused by the disease.
Their lead drug, Ellorarxine, has been approved by the UK’s Medicines and Healthcare products Regulatory Agency (MHRA) to begin its first clinical trial involving patients with MND and frontotemporal dementia (FTD).
Following the meeting, the MHRA invited Mark to take part in its ongoing patient engagement work.
Mark has also been praised by Prime Minister Keir Starmer, who recognised his campaigning efforts alongside those of rugby league legend Kevin Sinfield, whose best friend Rob Burrow died from MND at the age of 41.
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