Mark Sommerville and 60 supporters demonstrated outside the Scottish Parliament last week highlighting a lack of awareness of the rapidly progressive life-limiting disease.
A dad with motor neurone disease has accused the SNP of ignoring his Holyrood protest demanding more funding to find a cure.
Mark Sommerville and 60 supporters demonstrated outside the Scottish Parliament last week highlighting a lack of awareness of the rapidly progressive life-limiting disease.
The dad of four, from Uddingston, Lanarkshire, was given his MND diagnosis in October 2023 (correct) and told he had 18 months to live.
The 45-year-old set up the Mark Sommerville Foundation to fund research, but says letters to First Minister John Swinney begging for help have gone unanswered.
Prior to the demonstration, the foundation met with Scottish Labour’s Jackie Baillie and Mark Griffin along with Scottish Greens co-leader Gillian Mackay.
However dad Mark said: “The protest went well and it’s really important to keep highlighting the battle faced by those with MND because we don’t have time to wait.
“Prior to the protest we met with Jackie Baillie and Mark Griffin who were incredibly supportive.
“Scottish Greens co-leader Gillian Mackay came out too to show her support.
“Mark even came outside to talk to protestors and gave a speech, vowing to back us all the way in our fight. We spent hours outside Parliament speaking to MPs who took the time to stop and listen and we thank those who did.
“But no-one from the SNP came to speak to us. We spoke briefly to SNP Health Secretary Neil Gray as he headed to a car who provided us with contact details and encouraged us to once again send letters and emails.
“The truth is, we have been sending letters and emails for some time now — many of them unanswered.
“The SNP have been in charge for 19 years but they are not doing enough.
“People with MND, their lives matter. This disease does not wait. Families do not have the luxury of time.”
Mark was praised by PM Keir Starmer in Westminster in 2024 for his fundraising and told: “We stand with you in this fight.”
However, more than a year on, he believes the UK Government is also not doing enough to fund research into treatments.
The campaigner has also teamed up with pharmaceutical firm Nevrargenics, which is behind a drug it believes not only stops the impact of MND but reverses the damage already done.
Starmer recognised Mark’s work and that of rugby league star Kevin Sinfield, who has raised a million for sufferers of MND, which took his best friend Rob Burrow’s life in June, aged 41.
It also took Scotland rugby legend Doddie Weir in 2022, aged 52.
Scottish Greens co-leader Gillian Mackay said: “I want to see clinical trials here in Scotland. It has already been approved for the first stage of human clinical trials in England, and we should be giving that same hope to people in Scotland with MND that are calling for our help.
“We know that it is expensive, but for these families, you can’t put a price on having longer with a loved one. The strength of feeling and desperation these people and their families felt was clear when I spoke to them. They want any help they can get, and they are willing to take the risk because they are already living on borrowed time. On a human level, surely we can all understand that.
“The Scottish Greens will continue to engage with campaigners and push for the government to make progress in finding a cure, and improving treatment for those living with MND.”
Scottish Labour health spokesperson Jackie Baillie said “It was a privilege to meet Mark Sommerville this week and to the SNP should listen to his powerful comments.
“It is shameful that the SNP is dodging questions on this important issue.
“People with MND deserve a government that will work with campaigners to improve things instead of hiding from them, and that is what Scottish Labour will do.” The Scottish Government was approached for comment.