Miles Frost Fund: new research into HCM
Miles Frost died suddenly of HCM in July 2015. He was just 31. Miles’ family and friends have launched a charitable fund in partnership with the BHF, to raise £1.5m to set up a nationwide cascade genetic testing service for family members of those with HCM.
The first specialist nurses will be recruited early next year and could be in post by the summer. Genetic testing is approved by the NHS for first-degree relatives (children, parents and siblings) of people with HCM.
If someone doesn’t have the condition, there’s no need to test their children, but if they do, you would test their children then carry on testing first degree relatives of everyone who is found with the HCM gene.
This is called cascade screening, but it isn’t always delivered, for a variety of reasons, including a lack of awareness among the public and GPs, and the need for funds. The BHF has led the way in cascade screening, setting up services for a condition called familial hypercholesterolaemia, which is inherited in asimilar way to HCM.
The funding will be used to put into place genetic counsellors and specialist nurses with the proviso that the NHS then takes on the roles thereafter.
Professor Hugh Watkins
BHF Research Centre of Excellence, Oxford
The Miles Frost Fund will make a difference by helping to raise awareness of HCM, and by funding staff to deliver the testing in the NHS. “The funding will be used to put into place genetic counsellors and specialist nurses with the proviso that the NHS then takes on the roles thereafter,” Professor Watkins explains.
“That is good, because you then have a cadre of specialists in place, and the project becomes sustainable.”
Fundraising efforts so far have included 85 riders taking part in the 370-mile long Quintessentially Foundation Bike Ride, and a fundraising summer party held by the Frost family. Many more activities are planned.
Miles’ brother Wilfred says: “A death at as young an age as Miles was seems particularly unfair and particularly deserving of action. We want to prevent other families from going through what we have been through. It is wonderful that the fund is in Miles’ name, but the future is about the other 120,000 people in the
country with HCM.”
“This isn’t a case of putting money into research that might not yield results. The science exists, but the action doesn’t. We need to raise the money.”