Cystic fibrosis online plea

Many people may be struggling with social restrictions during the COVID-19 pandemic but for those with cystic fibrosis, isolating and being hyper-vigilant against germs is normal.

May is national cystic fibrosis awareness month with 65 Roses Day to be held on Friday, May 22.

CF is a genetic disorder, in which the lungs and the digestive system get clogged with mucus and 28-year-old Jackie Fraser from Busselton said although she had been diagnosed at birth, the debilitating condition had worsened and she would need a double lung transplant.

“We are so close to a cure with the new modulator medications so we can’t stop now,” she said.

“I am on oxygen 24/7 but I know people that have come off the transplant list thanks to this new medication. We need more fundraising so we can get closer to a cure.”

During the pandemic, Conquer Cystic Fibrosis Western Australia was forced to cancel its Capel Vale Ball and regular bingo nights costing about $400,000 in donations.

Therefore, CFWA is offering a digital rose to raise funds for about 400 CF patients in WA — about half of which are children.

Conquer Cystic Fibrosis South West co-ordinator Taryn Barrett said she was concerned about the impact of the COVID-19 pandemic on research and support service funding.

“Cystic fibrosis is such a complex disease with many complications so it’s vital that the research continues and that support services are available for those who need them,” she said.

Since 2009, more than 69,000 roses have been sold but with social-distancing restrictions making it impossible for physical rose sales, people wishing to donate can buy a digital rose from rosegarden.org.au.