Thanks to the generosity of our supporters, the Miles Frost Fund raised £1.5 million to help make genetic testing available to families affected by the potentially life-threatening condition hypertrophic cardiomyopathy (HCM).
The fund was set up in memory of Miles Frost, who died suddenly of HCM in July 2015. Young, fit and in the prime of his life, Miles was just 31.
Miles’ death devastated his family and friends. It was made even more painful when they were told Miles probably inherited the condition from his father, Sir David Frost.
At the time genetic testing that could have saved Miles’ life was not as widely available across the UK and Miles was never tested.
Our genetic testing services
If the Miles Frost Fund helps to prevent just one similar death occurring, then Miles will not have died in vain.
Wilfred Frost
Miles’ younger brother
The Miles Frost Fund was founded to stop more people going through the pain of losing a loved one to HCM. A total of £1.5 million was raised, allowing 13 genetic testing services to be established nationwide to help identify family members who have inherited faulty genes that can lead to HCM.
The first six genetic testing services in the UK were opened in London, Oxford, Sheffield, South Wales and Belfast. In 2018, seven more sites were launched in Leeds, Manchester, Birmingham and Scotland.
More than 500 people affected by HCM have been identified and supported by specialist genetic nurses and counsellors. These genetic testing services will now be sustained by the NHS with a longer-term view of introducing more across the UK, a fitting legacy created for Miles by his family and the Fund’s supporters.
Findings from the programme will be used by the BHF to influence healthcare providers to prioritise testing and treatment for inherited conditions that affect the heart on a national scale. This will help ensure more people receive the investigations and treatment needed that could potentially save their life.
Supporting new research
Despite this progress in genetic diagnosis, diagnostic tests for HCM are still not perfect. Often someone must suffer an acute cardiac event or a family loss before the condition is detected.
It’s estimated that around 120,000 people across the UK have HCM, most of them unknowingly, so we need to support new research to help improve diagnosis and understand the underlying process behind this potentially life-threatening condition, leading us to develop better treatments.