The Rotary Club of Busselton Geographe Bay is calling for entries for its annual Cystic Fibrosis Rotary Golf Day.
The event supports Cystic Fibrosis WA. Last year, the club raised $6000 for the organisation.
Club community service director Chris White said they hoped to beat their previous total.
“The golf day is a really fun event and it raises funds for lifesaving research into cystic fibrosis,” she said.
There is no cure for cystic fibrosis. Although revolutionary drug Orkambi was placed on the PBS this year, not all those with cystic fibrosis respond to the treatment.
As it is a genetic condition, there are more than 2000 mutations of the disease.
One mutation, Delta F508, is present in 92.2 per cent of people living with cystic fibrosis in Australia.
There are currently 11 clinical trials underway for medication to treat mutations, which do not benefit from Orkambi.
Cystic Fibrosis WA chief executive officer Nigel Barker said the clinical trials of Symdeko by Vertex Pharmaceuticals, the producers of Orkambi, were looking promising.
He said the organisation hoped there would be a stable of drugs available in the near future that treated the vast majority of those living with cystic fibrosis.
“We hope to achieve our vision of lives unaffected by cystic fibrosis and those living with cystic fibrosis living to their full potential,” he said.
Mr Barker said fundraising for research was absolutely fundamental to the organisation achieving its goal.
“We need to keep those young lungs healthy and clear, and maintain their health so they can benefit from these treatments and a cure in the future,” he said.
“It is easier to arrest the damage but it can’t be reversed.
“Small community groups like Rotary who do this, you can’t put a value on it, it is so important and every little bit helps. This fundraising will have a direct benefit to children and adults living with cystic fibrosis.”
Busselton’s Jackson Stokes, 15, and Damon McArthur, 17, both live with cystic fibrosis.
They will be participating in the Rotary golf day.
Both said they were thankful for the local club’s efforts.
“It is really great, in a way this fundraiser will equal better life opportunities for us,” Damon said.
The Cystic Fibrosis Rotary Golf Day will be held on Friday, November 30, from 10am at Busselton Golf Club.
Entry $200 per team and includes lunch and a sausage sizzle.
Register on the day or online at busseltongolfclub.com.au.
For more information contact Ross at ross@sanros.com.au or 0409 883 986.
