When Josh Moncrieff was diagnosed with the condition at 18, doctors said it was the worst case they had ever seen in someone so young.

A keen footballer at the time, the 24-year-old is aware now what his fate might have been.

The Scot is living with hypertrophic cardiomyopathy (HCM), the inherited disease of the heart muscle that  caused the-then 23-year-old footballer Fabrice Muamba to collapse during a game in 2012.


It is also likely to have caused the death of Motherwell and Celtic footballer Phil O’Donnell at the age of 35 in 2008.

Scientists now believe an injectable cure for inherited “sudden death” heart conditions could be available in a matter of years after being given a “once in a generation” opportunity.

READ MORE: Scots scientists bid to solve 'silent' heart attacks caused by common chronic condition 

A team,  made up of world-leading scientists from the UK, US and Singapore, has been given £30million by the British Heart Foundation - the biggest ever non commercial grant - to pioneer ultra-precise gene therapy technologies that could offer hope to the22,000 Scots affected by genetic cardiomyopathies.

This is a defining moment for cardiovascular medicine.

 The CureHeart team will attempt to correct or silence the faulty gene which produces an abnormal protein in the pumping machinery of the heart.

Where the faulty gene does not produce enough protein for the heart muscle to work as it should, the team plan to increase the production of healthy heart muscle proteins using genetic tools.


(Motherwell footballer Phil O'Donnell is thought to have had HCM)

The technology has already been proven to work in animals and on human cells and scientists believe the therapies could be delivered through an injection in the arm that could stop progression and potentially cure those already living with the condition.

It could also be used to prevent the disease developing in family members who carry a faulty gene.

When he was 12 Mr Moncrieff’s chest pains were was misdiagnosed as scoliosis, which causes a curvature of the spine.

He was finally diagnosed with HCM six years later after he suffered severe pain down the left side of his body during the night and was rushed to A&E.

He has now been fitted with an implantable cardioverter defibrillator (ICD), which help control any potentially life-threatening heart rhythms.

READ MORE: 'Life-changing heart procedure available to Scots after 10-year funding battle'

Six years on, the device has never been triggered but he is aware that the future is uncertain. His 10-year-old niece Mia also carries the faulty gene.

He said: “When I first found out, I was doing a lot of sports at college.
“Who knows what could have happened. 

“It’s [the research] that wee glimmer of hope. I try not to think about the what ifs because it can be quite daunting... the possibilities and how the diagnosis could affect you.

“I try no to think about potential life expectancy or heart transplants.

“If they could find a cure I could start thinking that wee bit further in life.

“If they could detect it at an early age it would be brilliant because obviously I’ve got family that have got the inherited gene.

“Hopefully my niece will never develop it,” added Mr Moncrieff, who works for Scotrail.

In many cases, multiple members of the same family will develop heart failure, need a heart transplant, or are lost to sudden cardiac death at a young age.

Professor Sir Nilesh Samani, Medical Director at the British Heart Foundation, said: “This is a defining moment for cardiovascular medicine.

“Not only could CureHeart be the creators of the first cure for inherited heart muscle diseases by tackling killer genes that run through family trees, it could also usher in a new era of precision cardiology. 

“Once successful, the same gene editing innovations could be used to treat a whole range of common heart conditions where genetic faults play a major role.”

Fabrice Muamba revealed earlier this year that his three sons have inherited the faulty gene that led to his collapse on the pitch.


It is ten year since the 33-year-old suffered a cardiac arrest during an FA Cup match between Tottenham Hotspur and his team Bolton Wanderers. 

Medics were able to get his heart beating after an astonishing 78 minutes.

Following medical advice after being diagnosed with Hypertrophic Cardiomyopathy (HCM) Muamba announced his retirement from professional football in August 2012.

He has three sons with wife Shauna - Joshua, 13, Matthew, eight, and five-year-old Gabriel – and a daughter Zuri, who was born in November 2020. 

He said his boys had been scouted by Liverpool FC, but the couple had pulled them out after they were told they had inherited the  RMB20 gene, which can mutate at any time.