'I believed MND was my death sentence - but I'll fight to the end for a cure'

An Uddingston dad given months left to live after being diagnosed with MND said he will “shout from the rooftops” in his fight to find a cure.

Dad-of-four Mark Somerville was given the devastating news he had the terminal condition in October 2023.

Mark, 43, began experiencing pulses in his left arm that summer which he initially thought was due to a minor stroke.

After being referred to the Queen Elizabeth University Hospital for tests, he was told by a consultant that he had MND and only had 18 months left to live.

He told STV News: “That was the death sentence I got. I was told ‘get your affairs in order, and enjoy what time you have left.

“I couldn’t move. I spent time crying in my room, thinking, ‘I don’t want to die.’ There was no other hope for me.”

“Then I thought, ‘I need to do something.'”

MND is characterised by progressive muscle atrophy, the wasting of muscle mass. It affects over 5,000 people at any one time in the UK.

Mark has since set up a foundation to help fund a groundbreaking new drug which could curb the impact of MND and even reverse its effects in patients.

He aims to raise £350,000 in manufacturing costs for the drug – and he hopes he will be among those to benefit.

Mark said his condition has taken a huge toll on his family over the last 15 months, especially wife Erika.

He said: “You look at yourself in the mirror, you can’t brush your teeth, brush your hair, tie your laces, or even go to the toilet yourself. This is how quickly this disease can take your life away from you.

“We all take these things for granted.

“One day Erika was my wife, the next day she became a carer, which is terrible.

“We have our arguments like any normal couple, but it must be very hard seeing her man slip away from her. It must be difficult.”

Mark and Erika's wedding day — Mark and Erika’s wedding day STV News

Mark with his two younger children Olivia and Cole STV News

Friend Lyndsey Park has joined his campaigning efforts after losing her mum to the condition in 2011.

She said she was “shocked” to find there were no advancements on MND care 14 years on.

“When I came to see Mark, I asked what was available to him, what they were going to give him. He said there was nothing they could do.

“How can that possibly be? All those years with nothing?

“We did research together and learned more about this new drug – we went from being told there was no hope to finding a drug that could stop it in its tracks.”

She added: “I’ve told Mark, ‘you get in people’s faces. If something can be found, you’ll find it. You’ll be the difference for MND sufferers’.”

Mark's friends Lyndsey Park, whose mum died from MND in 2011 — Mark’s friends Lyndsey Park, whose mum died from MND in 2011 STV News

It’s hoped the new treatment could be offered to patients by the end of 2025.

Neuroscience company Nevrargenics has recently been approved by the UK MHRA to begin clinical trials in the UK for Ellorarxine.

Chiefs say it will cost between £10m to £12m to carry out trials and manufacture the drug – and it’s currently about a year away from being brought to market.

CEO Professor Andy Whiting said: “It’s unbelievably frustrating, especially when you know that it’s just money holding you up. It would be in clinic by now if the investment was there.

“While we hope it’s very close to being a solved problem, we’ve been thinking that way for 12 or 18 months.

“If the development timeline from the cash getting into the account to getting that drug into people is 12 months, then we’ve lost that time.

“People aren’t putting resources in the right places and those of us at the coalface aren’t being consulted.

“Ironically, it’s people like Mark Somerville who are more likely to get the ear of government because he captures the public’s imagination and forces MPs to listen.”

Mark Somerville has been working with Nevrargenics STV News

Mark attended the UK parliament in December, where he and rugby star Kevin Sinfield were praised by Keir Starmer for their work campaigning for MND.

“I pay tribute to Mark, who is in the gallery, and the work of his foundation. This diagnosis can obviously be devastating,” he told ministers.

“It’s testament to his bravery and compassion that he is raising awareness of the condition. I think many of us would question whether we are capable of doing what he is doing, given the diagnosis he has had.

“Last week, I paid tribute to the inspirational Kevin Sinfield, another incredible champion. I say to both of them and all those campaigning: we stand with you in this fight.”

Mark said he will make it his mission to give people living with MND fresh hope.

He said: “I will fight this and give it my best shot. If I do die from this, I’ll die knowing I’ve made sure others’ lives are better.

“My anger is at the people in power that could move the dial.

“By the grace of God I’ll still be alive for it – but if not, I’ve done my bit. I’m a small guy shouting from the rooftops – come and shout with me.”

Public health minister Jenni Minto said: “We want to ensure that everyone with neurological conditions can access the care and support they need to live well on their own terms by implementing our neurological care and support framework. My officials look forward to meeting with members of the Mark Sommerville Foundation later this month.

“We are co-funding, with MND Scotland, a three-year clinical academic fellowship to help progress the search for an effective treatment. Further applications related to MND are welcome.

“Whilst we wish to see any new and ground-breaking medicines made available as quickly as possible, safety must remain paramount.”