£30 million CureHeart programme underway to develop first cures for inherited heart muscle diseases

The BHF is leading the way in cutting edge research and innovation into heart and circulatory diseases and sudden cardiac death with groundbreaking studies underway across the UK and around the world.

The charity’s £30 million CureHeart programme – the most ambitious research grant in the BHF’s history - aims to develop the first cures for inherited heart muscle diseases.

Dr Kathryn McGurk, whose parents are from Belfast and Newry, was born in Dublin and studied for a bachelor’s degree in Genetics at Trinity College Dublin before gaining a PhD in Cardiovascular Sciences at the University of Manchester.

She is now a cardiovascular geneticist, supported by a BHF Immediate Research Fellowship, and is part of the Imperial College London team working on the CureHeart Project.

Dr McGurk says: “My research aims to understand more about the genetic risk factors of cardiovascular diseases and their effects on heart structure and function. I use data science and bioinformatics to understand more about how our genetics affects the heart so we can advance clinical practice.

“At Imperial College London, we link large-scale genetic analyses with computer vision of heart imaging to develop better risk prediction and therapy response. Our involvement in CureHeart surrounds implementing new genetic therapies: identifying which patients will benefit from new genetic therapies and what we need to measure to demonstrate that benefit in a clinical trial.”

She added: “The goal of the entire CureHeart team is to develop cures for inherited heart muscle diseases, which are the leading cause of sudden cardiac death in young people. With the progress we have made, we hope to be able to start clinical trials within 5 years.”

BHF funding has allowed the CureHeart Project to make significant progress, but it needs further donations from the public to continue their vital work.

Fearghal McKinney, head of BHF NI said: “CureHeart is the British Heart Foundation’s most ambitious research programme ever. It will develop the first cures for inherited heart muscle diseases that can kill young people in the prime of their lives, by pioneering approaches to edit or silence the faulty genes that cause them – providing hope to many families across the world.

“However, BHF can only invest in transformational research like this thanks to the generosity of our loyal supporters – so we need continued and increased support if we’re to keep backing lifesaving research like CureHeart.

Glengormley mum Sharon Lyttle knows only too well how inherited heart disease can have a devastating impact on a family.

Sharon lost her husband and two sons to heart conditions.

Sharon and her husband Neil were left distraught in June 2008 when their eldest son Ryan (13) died suddenly.

Thirteen months later, Neil, who was just 40 years of age, passed away from hypertrophic cardiomyopathy (HCM).

Ryan’s death was said at the time to have been the result of an asthma attack, but following his father’s tragic passing in August 2009, it was presumed the teenager also had a cardiomyopathy.

With her husband and eldest son passing away so close to each other, Sharon made sure youngest son Niall (9) was screened for a cardiomyopathy and he was diagnosed with hypertrophic cardiomyopathy.

Niall was put on medication and gave up the competitive physical sports he enjoyed – hurling and inline hockey, on the advice of his specialist.

However, he was still able to enjoy less strenuous sports such as golf, and he became a referee for inline hockey.

Sharon says: “Because of what happened to Niall’s daddy and his brother, with his diagnosis I made sure he was kept busy so the heart condition didn’t hold him back.

“He was a member of two local golf clubs – his main club Greenacres and for a while he played at the Hilton Templepatrick. Before he was 18, Greenacres asked him to play for their society and he was also Junior Captain.

“Niall had a wonderful personality. With it being just the two of us for so long, we were very close and had a special bond. Niall would always sit and chat with me and make sure I was okay.

“He was so loving and kind and would always make sure he visited his two grannies. Niall was also very popular with his work and university friends, he had a big cheeky smile and was very witty.”

Niall was studying international hospitality and business management at Ulster University and Sharon said he hoped to get into hotel management. He had a placement organised, however Niall never got to complete it.

On 14th November 2018, 10 years after his brother had sadly died, Niall went on a University team-building night out on the Belfast party bikes.

It was there he had a cardiac arrest.

Bystanders worked on him with a defibrillator and called an ambulance but he had another cardiac arrest in the ambulance.

Niall was taken to the ICU at the Royal Victoria Hospital in Belfast and with his heart having stopped, he was placed on a ventilator until 18th November. Sadly, family and medical staff had to take the heartbreaking decision to turn the ventilator off.

Sharon says: “His friends on the bikes said Niall went pale and his hands were shaking just before he fell off it, but the consultant said we don’t know and we probably won’t ever know if he had the cardiac arrest and fell off the bike or fell off the bike and had the cardiac arrest.”

Five years on and Sharon says the pain of losing Niall never goes away.

“Losing Niall was a living nightmare especially after what I’d gone through losing his brother and dad. Having such a close family circle with my sisters has got me through.

“I still meet with Niall’s friends and I can see how much he meant to them all and how much he is still missed. It also gives me some comfort to know that the two boys are now with their daddy.

“His uni lecturers still keep in touch with messages on his anniversary and they have the Niall Lyttle Cup for placement in his memory.

“At his college, Edmund Rice, they all remember him with the Niall Lyttle award for hospitality.”

Sharon continues to keep the memories of her boys alive by celebrating their anniversaries and birthdays and she says remembering them alongside their friends gives her some peace.

Sharon and her family have raised thousands of pounds for charities in Niall’s memory and said the generosity of people has been “overwhelming.”

She is supporting British Heart Foundation’s urgent call for more funding into research to understand the causes, and find cures, for sudden cardiac death.

Sharon added: “People have been amazing in their support over the past number of years but more needs to be done to help people out there suffering from inherited heart conditions.

“I would encourage everyone to donate to BHF to help fund more lifesaving research to prevent other families going through the heartbreak I am.”