Why your miles matter
Miles, son of Sir David Frost was just 31 when he died suddenly on 19th July 2015. Young, fit and in the prime of his life, his death devastated his family and friends. They didn't know he suffered from a deadly inherited heart condition - hypertrophic cardiomyopathy (HCM)
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.
Summer 2019 will mark four years without Miles, and alongside his brothers Wilf and George, everyone who takes on Prudential RideLondon - Surrey 100 for us on 4th August 2019 will be helping to fund vital research into inherited heart conditions.
About the Miles Frost Fund
The Miles Frost Fund aims to raise £1.5 million to help make genetic testing available to all families affected by the deadly heart condition hypertrophic cardiomyopathy.
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 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 - with 120,000 living with the condition across the country.
Each child of someone with the condition has a 50% 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, the rollout of genetic testing for families is slow - and it’s a lottery as to whether those 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, Miles' life won't have been in vain.
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.
The NHS has recently confirmed that at the end of the funding, they 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, and means money you raise over and above the £1.5million target will be spent on research into inherited heart conditions.
With your support, the Frost family can stop more young people like Miles needlessly losing their lives to this deadly inherited heart condition.