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NI inherited cardiac conditions centre recognised in London after receiving support from family of Sir David Frost

Posted By:
British Heart Foundation NI

2nd Dec 2025

A hospital centre in Belfast that helps families living with inherited heart conditions has been recognised for its work at a British Heart Foundation (BHF) event in London, after receiving major funding from the family of the late broadcaster, Sir David Frost.

The Heart Hero Awards took place at the Bloomsbury Ballroom last week and saw the Frost family receive a special award in recognition of their support of the British Heart Foundation and the Miles Frost Fund, a charity that has made a significant contribution to the Northern Ireland Inherited Cardiac Conditions Centre.

The presentation to the Frost family was made by Carrickfergus mother and daughter, Deena and Rebecca Robinson, who are patients at the Belfast Unit, situated at the City Hospital.

The Miles Frost Fund was set up to support BHF by the family of the late broadcaster Sir David Frost, in memory of his son, Miles, who died suddenly in 2015.The fund raised £1.5 million to help make genetic testing available to families affected by cardiomyopathy across the UK.

Wilf and George Frost who received the award on behalf of the Frost family commented: “When Miles died we were completely devastated but thought that if we could help to prevent other families going through what we went through then, despite the extraordinary sense of loss, perhaps his death would not have been in vain.

“We are so happy we decided to partner with the British Heart Foundation in creating the Miles Frost Fund ten years ago. The progress in this area, which the BHF has been at the heart of, is wonderful to see. And it is a privilege that some part of that progress is in Miles’ name and to hear of the specific examples where families have benefited from the Miles Frost Fund. We’re humbled to accept this award on Miles’ behalf, who we miss immeasurably, but whose legacy lives on thanks to the BHF.”

In 2017, the NI Inherited Cardiac Conditions Centre was the first in the UK to benefit from a share of the Miles Frost Fund and the funding was used to increase capacity in the service. Deena and Rebecca Robinson have been patients of the Unit since 2018, when Deena received her diagnosis of hypertrophic cardiomyopathy (HCM) at age 47 and Rebecca at age 15.

Dr Alison Muir, cardiologist and clinical lead for NI Inherited Cardiac Conditions Centre in NI said: “The Northern Ireland Inherited Cardiac Conditions Service was the first in the UK to benefit from the Miles Frost BHF fund with the addition of an Inherited Cardiac Conditions Nurse Specialist to our team.

“This allowed us to increase our capacity to see more patients in Northern Ireland with inherited cardiac conditions, with a focus on those patients with cardiomyopathy.

“We now see over 1200 patients per year, both new and review patients and we commit to the long-term follow-up of these individuals as required by their clinical condition.

Dr Muir added: “It is a privilege to look after families with inherited cardiac conditions especially when our service has been supported by the Miles Frost family, a family who know first-hand how devastating these conditions can be.”

An estimated 9,500 people in Northern Ireland have an inherited heart condition with around 4,000 of them having hypertrophic cardiomyopathy. Each week in the UK at least 12 young people (aged under 35) die from an undiagnosed heart condition.

Fearghal McKinney, head of British Heart foundation, said: “Since 2017 thousands of families here, like Deena’s, have benefitted from the service at the NI Inherited Cardiac Conditions Unit and the work it does in diagnosing and supporting families living with inherited heart conditions.”

Fearghal added: “BHF is leading the way with cutting-edge research and innovation into cardiovascular disease, including the causes of sudden cardiac death. 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 cardiomyopathies.”

Deena and Rebecca’s story

Deena Robinson, an HR Business Partner from Carrickfergus, is 54 with two daughters in their twenties.

Deena’s mum (now turning 80 years of age) was diagnosed with HCM after becoming unwell and being asked to be part of a research group.

Deena said: “I’ve been coming to the testing centre since 2018 and after being diagnosed with HCM, I knew that my daughters might have that too, which is obviously a concern as a mum that you’ve passed that onto your daughters.

“However, the testing centre means that you can be monitored, if we have any queries or concerns we can contact them for advice. Without the Miles Frost fund, we might not have that support and so I’m very thankful to the Frost family.

Deena continued: “My mum became very unwell in her 40s and was eventually diagnosed with HCM. She ended up in a research group, and that identified that she had a faulty gene. Her mum had passed it onto her and had the condition too although at that point it wasn’t known what the condition was. They then were able to determine that my mum’s mum had likely passed away with the same condition, which wouldn’t have been known at the time.

“Then because my mum had the faulty gene and condition, I was invited into the research group and I was tested and found to have it. I have two daughters so they were then brought into the research group and my daughter Hannah was given the all clear and my daughter Rebecca was also diagnosed with the faulty gene and at the same time, diagnosed with having the condition.

“We’ve been coming to the Unit since 2018 to be monitored for the progression of the condition but also for general guidance and advice and any support we need or concerns we have. Rebecca plays a lot of sport, she’s young and in her twenties and has a lot of life decisions to make having had the condition present itself so young.

“To have the support of the centre to give her guidance through her life and to know when treatment is needed is invaluable. Because of the centre’s treatment and intervention my mum is now turning 80 which is fantastic.”

Deena added: “It’s difficult to receive the diagnosis of a heart condition as it’s a life-long condition but equally it’s comforting to know that we’ll be monitored, and the centre gives us great reassurance.

“We are very grateful to the Miles Frost Fund for providing the additional service. As a family through a couple of generations we’re benefitting from that and equally if Rebecca has any children, they’ll be tested early.”

Deena’s daughter who has HCM, Rebecca, is a hockey player, gym-goer and very sporty but has had to adapt some of this activity due to the diagnosis.

Rebecca said: “I’ve always grown up playing hockey but when I was diagnosed I had to change the way I played and adjust to take breaks when I need them and not push myself beyond my limits.

“I really enjoy sport, going to the gym and playing tennis and padel and the great thing is I can still do all of that but I know now just to keep a check to make sure I’m feeling good and looking after myself.

“I track my heart rate through my smart watch and make sure if I’m too out of breath, I come off the pitch.

“I come to the centre annually for check-ups. As a young person I know it’s important that I keep the appointments and it means if I have any progressions and I can get treatment quickly.

Rebecca added: “It also gives me peace of mind knowing that if I have kids, they can be tested. It is a condition that is very manageable with the right approach.”