The Miles Frost Fund launched to prevent deaths from undiagnosed heart condition

31 January 2016        

Category: Survival and support

Miles Frost

Sir David Frost’s eldest son, Miles Frost, died suddenly of an undiagnosed heart condition last year, aged just 31. Today the family have launched a charitable fund, in partnership with the BHF, to help save lives from this hidden killer.  

Miles died from hypertrophic cardiomyopathy - a condition which the family believe he inherited from his father. The fund will help prevent more families going through the pain of losing a loved one to undiagnosed heart conditions, which kill 12 people aged 35 and under in the UK every week.

The condition

It’s estimated that one in 500 people are born with the faulty gene that causes HCM - meaning around 120,000 people are living with it in the UK. Each child of someone with HCM has a 50 per cent chance of inheriting the condition. 

For some - like Miles Frost - HCM can lead to sudden death at a young age, often without warning.

The fund

The Miles Frost Fund aims to raise £1.5million to setup a nationwide cascade genetic testing service for family members of those who have died of, or have been diagnosed with HCM. This will ensure more people receive the screening and treatment they need to prevent sudden death.

Wilfred Frost, brother of Miles Frost, said: “When Dad died we were all in utter shock. He went too soon - both suddenly and unexpectedly. But when Miles died last summer, it was even worse. Totally and utterly out of the blue, whilst he was still so young with so much left to give.

We are determined to look forward, and plan to use his passing to create a positive legacy by improving diagnosis for HCM. If the Miles Frost Fund helps to prevent just one similar death occurring, then Miles will not have died in vain.”

The research

Thanks to BHF research, many of the faulty genes that cause HCM have been discovered. BHF Professor Hugh Watkins helped to develop a test to identify a gene mutation in family members of those who have died or been diagnosed with HCM.

The money raised by the Miles Frost Fund will help ensure people most at risk are referred for testing so they get the treatment that could potentially save their life.

BHF Professor Watkins said: “The life saving potential of genetic testing in affected families is huge, as this is the most effective way to identify individuals at risk and treatments are then available to protect them. We must now work with the NHS to raise awareness and ensure that every family at risk across the UK has access to genetic testing services. The Miles Frost Fund will help us to achieve this and prevent people, like Miles, being torn from their families without warning.”

Find out more about the Miles Frost Fund or make a donation to support the rollout of genetic testing for HCM.