Mark Sommerville will be joined by 100 supporters to demand more help, funding and awareness of the rapidly progressive life-limiting disease.
A dad with MND will protest outside Holyrood on Wednesday to demand more funding to help find a cure.
Mark Sommerville will be joined by 100 supporters to demand more help, funding and awareness of the rapidly progressive life-limiting disease.
The dad of four, from Uddingston, Lanarkshire, was given his MND diagnosis in October 2024 and told he had 18 months to live.
The 45-year-old has since set up the Mark Sommerville Foundation to fund research, but says a letter to First Minister John Swinney begging for help has gone unanswered and believes the government is not doing enough to help fund new treatments.
The foundation will meet Scottish Labour leader Anas Sarwar before the protest.
Mark said: “Those diagnosed with MND don’t have time to wait. We urgently need more funding imminently, more research put into finding a cure for this horrendous condition.
“This protest is to highlight the lack of funds, also the lack of awareness from the Scottish Government.
“The SNP have been in charge for 19 years but they are not doing enough. People with MND, their lives matter and I just feel they don’t care.”
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 which 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.
Labour’s Jackie Baillie said: “John Swinney should meet Mark to hear his case, rather than turning his back.”
Public health minister Jenni Minto said: “I fully understand and support the Mark Sommerville Foundation’s desire for any new and ground-breaking medicines to be made available as soon as possible.”