Every Breath Counts: Australia’s CF Month, Explained

May is Cystic Fibrosis Awareness Month — a time to understand one of Australia’s most common life-limiting genetic conditions and to stand with those who live with it every day.There’s a story that sits at the heart of the cystic fibrosis community. In 1965, a four-year-old boy named Richard overheard his mother — a volunteer fundraiser — talking about the disease he had been diagnosed with. Unable to pronounce “cystic fibrosis,” he repeated back what he thought he’d heard: “sixty-five roses.” His mother wept, not just at his innocence, but because it was beautiful in its own way. Today, those two words have become a global symbol for the community — appearing on ribbons, lapel pins, and fundraising challenges the world over.

Here in Australia, May is dedicated to honouring that spirit. It’s Cystic Fibrosis Awareness Month — 31 days of events, fundraisers, stories shared, and landmarks lit up in red. But more than any single campaign, it’s a month to understand what cystic fibrosis actually is, who it touches, and what the future holds for those living with it.

What is cystic fibrosis?

Cystic fibrosis (CF) is a progressive, genetic condition caused by mutations in the CFTR gene — the Cystic Fibrosis Transmembrane Conductance Regulator. This gene normally controls the movement of salt and water in and out of cells. When it’s faulty, the body produces mucus that is abnormally thick and sticky, rather than the thin, slippery secretions that keep airways and organs healthy.

The result is a relentless cycle. In the lungs, that thick mucus traps bacteria, causing chronic infections, inflammation, and, over time, serious lung damage. In the digestive system, it can block the ducts of the pancreas, preventing the release of enzymes needed to absorb nutrients. CF can also affect the liver, sinuses, sweat glands, and reproductive system — making it one of the most complex conditions a person can be born with.

“Cystic fibrosis is Australia’s most common life-limiting genetic disease — and yet, outside of those directly affected, awareness remains surprisingly low.”

– Cystic Fibrosis Australia

CF is inherited in what’s called an autosomal recessive pattern — meaning a child must receive one faulty CFTR gene from each parent to develop the condition. Parents who each carry a single copy of the gene are healthy and often have no idea they’re carriers. With approximately one in every 25 Australians carrying this gene, the chances of two carriers having a child together are more common than many expect. And when that happens, there is a one-in-four chance of their child being born with CF.

There are more than 2,000 known mutations of the CFTR gene. Symptoms and severity vary significantly between individuals — which is part of what makes CF such a complex condition to research, treat, and explain.

What does living with CF look like?

Managing cystic fibrosis is a full-time commitment. A typical daily routine for someone with CF may involve hours of airway clearance — using physiotherapy techniques, specialised vests, or handheld devices to loosen and shift mucus from the lungs. Inhaled medications help thin secretions and open the airways. Antibiotics — taken orally, inhaled, or intravenously — fight the bacterial infections that build up constantly. Digestive enzyme capsules are taken with every meal to allow the body to absorb nutrients.

For many Australians with CF, this routine begins in infancy and never stops. It is tiring, time-consuming, and emotionally demanding — not just for those living with the condition, but for the families and carers who support them. Multidisciplinary care teams, including respiratory physicians, physiotherapists, dietitians, pharmacists, and psychologists, are central to managing CF well.

A new era of treatment

In recent years, a class of medications called CFTR modulators has transformed outcomes for many people with CF. Unlike older treatments that only manage symptoms, these drugs — including Trikafta, Kalydeco, Orkambi, and Symdeko — work by correcting the faulty CFTR protein at its source. While they are not a cure, and not everyone is eligible for them, they represent the most significant therapeutic advance in the history of CF.

 

Despite this progress, the hard reality is that CF still has no cure. Research is ongoing, and the CF community in Australia is acutely aware that access to new therapies must be equitable — not every mutation is covered by existing modulators, and not every patient responds in the same way. The work is far from done.

CF Month and 65 Roses Day

Every May, the Australian CF community comes together under the banner of CF Awareness Month — a nationally recognised campaign to raise funds, share stories, and push for greater public understanding of the disease. The campaign is anchored by a singular, beloved event: 65 Roses Day.

Taking place annually in May, 65 Roses Day is the community’s most cherished fundraising moment. Across the country, rose stems are sold at local shopping centres and landmarks. Fundraisers take on personal challenges built around the number 65 — running 65 kilometres, swimming 65 laps, cycling 65 minutes a day. State and territory organisations illuminate prominent local landmarks in red, a visible declaration of solidarity with those living with the disease.

The campaign is organised through a network of state-based CF organisations and supported nationally by Cystic Fibrosis Australia and CF Together. Its aim is not only to raise money for research and support services, but to ensure that every Australian — regardless of whether CF has touched their life directly — understands what the disease is and what the community needs.

 

How to get involved this May

1. Take on the 65 Roses Challenge — run, walk, swim, cycle, or bake your way to 65 of anything. Register a fundraiser and collect donations for your state’s CF organisation.

2. Buy a rose — purchase a rose stem at participating shopping centres and local markets across Australia during May. Every dollar supports research and community programmes.

3. Share your story — if you or someone you love lives with CF, use the hashtag #CFAwarenessMonth to share your experience on social media. Visibility matters.

4. Light it red — watch for local landmarks and monuments illuminated in red throughout May as a symbol of community support across every state and territory.