Thursday the 22nd of May is 65 Roses Day and Cystic Fibrosis WA (CFWA) is calling on support from all West Australians to paint the state with roses and help them reach their biggest target yet, to sell 26,000 roses!
“One in 25 of us carries the gene most don’t even know it.” That’s how Lisa Bayakly, CEO of Cystic Fibrosis WA, explained the hidden reality behind a life-altering condition affecting hundreds of West Australians.
Lisa joined Doug to share powerful insight into cystic fibrosis (CF), the community it impacts, and how we can all get involved through the upcoming 65 Roses Day.
What Is Cystic Fibrosis?
Cystic fibrosis is a rare, inherited condition. It affects about 400 people in Western Australia. “It’s a life-limiting genetic condition,” Lisa said. “People with CF have a faulty gene that creates a build-up of thick, sticky mucus.”
This mucus affects more than just the lungs. It impacts nearly every system in the body, making day-to-day life much more complicated for those who live with the disease.
How Is It Inherited?
CF is hereditary. A child inherits it when both parents carry the faulty gene. “Most people don’t know they’re carriers,” Lisa explained. “It’s often not discovered until someone has a child with CF.” There are over 2,000 possible gene mutations linked to the disease, making it highly complex.
Is There a Cure?
Sadly, no cure exists yet.
However, treatments have advanced significantly. “It used to be a poor prognosis,” said Lisa. “Now, with the latest treatments, children might live into their 50s or 60s.”
Even with new therapies, life with CF requires daily effort from physiotherapy to medication.
Why Lung Health Matters
Because CF heavily affects the lungs, any cold or virus can be dangerous.
“People with CF have to protect their respiratory health,” Lisa said. “Infections are harder to clear and cause lasting damage.”
What’s more surprising? People with CF can’t meet in person. “They can pass infections to each other,” Lisa explained. “So we connect them online instead.”
Building a Virtual Community
Despite the risks of in-person contact, connection still matters deeply.
“We run online connection sessions from age six,” Lisa shared. “They chat, play Lego, and just know they’re not alone.”
There’s also strong support for families. Cystic Fibrosis WA hosts events like Grandparents Day, ladies’ high teas, and men’s catchups. “We want to reduce the isolation for the whole family,” Lisa said.
What Is 65 Roses Day?
The name has a beautiful origin.
“In the 1960s, a little boy misheard his mum talking about cystic fibrosis and said, ‘Mum, I have 65 roses,’” Lisa shared. “It’s become a global symbol of hope.”
Every year, 65 Roses Day raises funds and awareness. Volunteers wrap long-stemmed roses, sold across Perth in shopping centres, Bunnings, and even by delivery.
Too busy to buy a real rose? There’s a virtual rose garden online at rosegarden.org.au. “You can plant a rose to show your support,” Lisa said.
How the Funds Are Used
All money raised goes toward two vital areas:
- Services: These include connection programs, counselling, and in-home support.
- Research: Cystic Fibrosis WA helps fund research and pushes for access to new treatments, particularly those available in the US and UK.
Powered by Volunteers
The campaign wouldn’t exist without community help. “We have 15 staff and 250 volunteers,” Lisa said. “They rep roses, deliver them, and run the stalls. We literally couldn’t do it without them.”
How You Can Help
Buy a rose in person or online. Donate. Spread the word. “We’d love your listeners to get involved,” Lisa urged. “Every rose helps us raise awareness and bring hope to families living with CF.”
For more, visit rosegarden.org.au and support 65 Roses Day this May. “It’s a powerful symbol, but also a real, practical way to make a difference.” Lisa shared.