Miles Frost died suddenly of hypertrophic cardiomyopathy (HCM) in July 2015. Young, fit and in the prime of his life, Miles was just 31.
Miles’ death devastated his family and friends. And it was made all the more painful when they were told Miles probably inherited the condition from his father, Sir David Frost.
Clinical and genetic tests are available to identify those at risk of HCM, but Miles was never tested.
In Miles’ memory, the Frost family have set up the Miles Frost Fund to raise money for the BHF to stop more people going through the pain of losing a loved one to deadly heart conditions like HCM.
The Fund will help ensure that genetic testing for immediate family members of those affected by HCM is available nationwide. This will mean more people are diagnosed with the deadly condition so it can be treated before it’s too late.
So far the fund has raised over £1,000,000 and the first patients have been seen by a Miles Frost Fund cardiac genetic nurse in Belfast.
A deadly inheritance
Every week in the UK 12 people aged 35 and under die of an undiagnosed heart condition. HCM is the biggest cause of these deaths and around 120,000 people are living with the condition across the country.
Each child of someone with the condition has a 50 per cent chance of inheriting it from the affected parent. But thanks to BHF research, the genes responsible can often be identified and with treatment most people can lead a normal life.
However, despite these scientific breakthroughs, rollout of genetic testing for families is slow and it’s a lottery as to whether people at risk will be referred. This means people are missing out on a potentially life saving treatment.
Help end the heartache
If the Miles Frost Fund helps to prevent just one similar death occurring, then Miles will not have died in vain.
Miles’ younger brother
The Miles Frost Fund funds two-year posts for specialist genetic nurses and counsellors to work within inherited heart condition clinics to improve referral and diagnosis for families affected. It will also support the infrastructure needed to create a nationally coordinated service and raise awareness of the benefits of genetic testing.
At the end of the funding, the hope is that the NHS will sustain the nursing posts created by the Miles Frost Fund and roll out the service nationally. This will ensure more people receive the investigations and treatment they need to potentially save their life.
If the Fund raises more than £1.5 million, additional funds will support BHF research in to inherited heart conditions including HCM.
With your support, the Frost family can stop more young people like Miles needlessly losing their lives to this deadly heart condition.