Two Canberrans will be attempting the ‘great escape’ for cystic fibrosis (CF) in September, to raise funds and awareness for national organisation, Cystic Fibrosis Australia (CFA).
The Great Escape is a charity car rally, taking participants from around Australia on a course through regional Australia. This year’s event will see teams make their way from Cowra to Murrumbateman over 10 days. Teams must race in a car that’s at least 20 years old, and raise a minimum amount of funds to enter.
Friends since university, Leon Down and Andrew Jack have participated in the annual event eight and five times respectively to support the work of CFA. Leon’s interest in the event is personal; his 35-year-old daughter Katie was born with CF, and he estimates he has raised almost $40,000 for CFA over the years through the ‘great escape’.
“I’ve done time on the local [CF] association committee and the national board … and this was another way to raise money and awareness for cystic fibrosis,” he says.
“CFA runs a big database that collects information about all the participating people with cystic fibrosis. It’s a fundamental tool for research and the medical stuff we do.
“You can’t do research or lobbying or argue for better services if you haven’t got the information.”
A genetic condition, CF affects the lungs, airways and the digestive system. According to CFA, around one in 2,500 people are born with the condition, which is lifelong and requires extensive medical treatment.
“When [our daughter] was born they told us the average life expectancy was 16/17 years. It keeps getting pushed out,” Leon says.
He says “life changing” drugs to treat CF can be “horrendously expensive” unless covered by the Pharmaceutical Benefits Scheme (PBS), so raising funds is important to help CFA advocate on behalf of people with the condition.
“We’re helping people with cystic fibrosis. We’ve got a vested interest, so we’re always pleased to be able to give money,” he says.
Leon and Andrew want to encourage more people to either donate to the cause or get involved themselves, referring to the great escape as their “holiday”.
“It’s a competition, you’ve got to turn left here, turn right there, it’s navigation down to the 10 metres,” says Andrew.
“The fundraising’s the important part of it. This trip that we go on … it’s just great fun. It’s easier to raise money if you’re doing something enjoyable.”
For more information on CFA The Great Escape, or to donate to Leon and Andrew’s attempt, visit cysticfibrosis.org.au/greatescape and contact ‘Track Boss’ Terry Stewart.