After watching his daughter Courtney battle through ill health during her teenage years, Mike Read set up Cystic Fibrosis Guernsey – alongside another father whose daughter was a sufferer – to help raise awareness and funds to help islanders with the condition to get the right treatment.
Having achieved what it was originally formed to do, Mr Read said that he believed the charity had ‘reached a dead end’ and that if new people with new ideas did not step forward the trustees would dissolve it.
But come October the charity will be relaunched with a new set of trustees who believe the charity can still support islanders suffering with Cystic Fibrosis.
‘Mike did an amazing job with the other trustees. Their objective was to raise awareness and lobby for medication for CF and Mike achieved what he wanted to do, but the crusade continues and that’s the need to carry on a trust,’ said new trustee Glen Tonks.
While the goal of securing drugs for cystic fibrosis sufferers in Guernsey was achieved, Mr Tonks said the charity would now focus on providing support by following new developments in technology and drugs that can help sufferers, as well as developing a community of people who understand what they are going through.
‘We are continuing to support families, whether that’s making them aware of what’s happening in the UK or around the world in terms of drug development or other sorts of treatment, and potentially supporting them with the need to go to the UK because most of, if not all, the treatment is in the UK.
‘I think also trying to make it a support group or community because this is a very small community, it’s very isolating, but there are others here that understand it.’
Mr Tonks said that as far as he was aware there were five families in Guernsey affected by cystic fibrosis – his own being one of them.
‘Our youngest daughter lives with CF and because of the personal connection, we didn’t want the charity to finish,’ he said.
‘We need to do more and the five families want to do more.’
The charity is set to relaunch in October with an event at Government House.