Friends for years and with CF as their connection, Laura and Petrina have figured out how to raise CF awareness across the world. How does cystic fibrosis care compare between Australia and the United States? Host Laura Bonnell talks with Petrina Fraccaro, CEO of CF Queensland, about her journey into CF advocacy, the mission of CF Queensland, and the support available to individuals and families living with cystic fibrosis. Laura and Petrina also discuss the global landscape of cystic fibrosis, including advocacy, carrier screening, and international collaboration. They share insights from worldwide conferences, highlight the importance of community support, and explore opportunities to improve access to care and medications for people living with CF around the globe. As cofounders of the CF Global Advocacy Alliance (CFGAA), the women talk about how organizations around the world are working together to create a brighter future for the CF community. A Personal Connection to Cystic Fibrosis Petrina’s path to CF advocacy is an interesting one. With a background in public relations, education, and working to empower women, she eventually began looking for an opportunity in the not-for-profit world. She wanted to use her skills for something meaningful, particularly for a chronic illness that many people didn’t understand. But CF wasn’t completely unfamiliar to her. As a child, Petrina had watched a family friend live with cystic fibrosis. That early experience stayed with her and eventually helped lead her into a career advocating for people and families affected by CF. Today, that passion has grown into leadership at Cystic Fibrosis Queensland, where she works to make sure people living with CF and their families have the resources, support, and advocacy they need. Supporting Families Through Cystic Fibrosis Queensland Cystic Fibrosis Queensland provides support across Queensland and the Northern Territory, helping families navigate the financial, emotional, and practical challenges that come with CF. Petrina talked openly about the challenges the organization has faced, including financial sustainability. Rather than trying to do everything, she focused on listening to the CF community and identifying the services that were most important. Those services include: Medical subsidies to help families manage the costs associated with CF care. Specialty grants that can help provide equipment such as nebulizers and oxygen concentrators. Education scholarships that help people with CF pursue college, training, and career opportunities. Mental health support for people with CF, their families, and caregivers. What struck me throughout our conversation was how much of this work comes down to one simple idea: people should not have to navigate CF alone. Why Awareness and Education Still Matter It can be easy to look at the incredible advances in CF treatment and think that we have solved many of the problems associated with the disease. We haven’t. While CF treatments have changed dramatically—and modulators have given many people with CF opportunities that previous generations never had—there are still people who are diagnosed late, people who don’t have access to the newest treatments, and families who don’t understand what CF means when it enters their lives. Petrina talked about the importance of reaching immigrant and multicultural communities in Australia, where cystic fibrosis may not be well understood or even recognized. That education extends beyond families. Healthcare professionals and the broader community also need to understand CF so that people can be diagnosed as early as possible and connected with appropriate care. The Importance of Carrier Screening One of the topics we discussed that I think deserves much more attention is genetic carrier screening. Cystic fibrosis is an inherited condition, and a person can be a healthy carrier without ever knowing it. In Australia, Cystic Fibrosis Australia estimates that approximately 1 in 25 people carry a CF gene change, and most carriers are unaware of their status. Research from Australia also demonstrates just how important broader carrier screening can be. In a study of 12,000 people undergoing reproductive carrier screening for CF, spinal muscular atrophy, and fragile X syndrome, 342 people were identified as CF carriers, about 1 in 34 people screened. Approximately 88% of the people identified as carriers had no known family history of the condition. That last statistic is especially important. You don’t have to have a family history of cystic fibrosis to be a carrier. Australia took an important step in November 2023 when reproductive carrier screening for CF, spinal muscular atrophy, and fragile X syndrome was added to the Medicare Benefits Schedule for people who are pregnant or planning a pregnancy. Testing has increased significantly since then, although there is still a need for greater awareness and education about carrier screening. For me, this is another reminder that education can change lives. Knowing your carrier status can give people information they can use when making decisions about starting or growing their families. Mental Health Is Part of CF Care Another part of our conversation that really stood out to me was mental health. Living with CF is not just about medications, clinic appointments, hospitalizations, treatments, and lung function numbers. It can affect every part of a person’s life, and it affects the entire family. Cystic Fibrosis Queensland has developed mental health programming that supports people with CF as well as their families and caregivers. Petrina also talked about mental health first-aid training, which can give people the tools to recognize when someone may be struggling and help connect them with appropriate support. We also talked about something that comes up frequently in advocacy: the power and responsibility of sharing your story. Personal stories can educate people, change hearts, raise money, and influence policy. But constantly telling your story can also be emotionally exhausting. That means we need to make sure the people sharing their experiences are supported, too. Advocacy Is About More Than Awareness One of my biggest takeaways from talking with Petrina is that advocacy isn’t just about making people aware that cystic fibrosis exists. It’s about changing systems. It’s about making sure families can afford the care they need. It’s about access to medications and equipment. It’s about education. It’s about mental health. It’s about genetic screening. It’s about making sure people in every community—including communities where CF may be less recognized—have access to knowledgeable healthcare. And it’s about making sure that progress in CF doesn’t leave people behind. Looking Toward the Future Petrina’s journey is a great example of what can happen when someone combines professional skills with a personal passion for making a difference. Our conversation reminded me that the CF community has come incredibly far, but there is still so much work to do. The treatments may be changing. The life expectancy for people with CF is changing. The way we think about CF is changing. But the need for advocacy, education, support, and connection isn’t going away. And that’s why conversations like this matter. I’m grateful to Petrina—not only for the work she does every day for the CF community in Australia, but for the friendship we’ve built through our shared commitment to making life better for people and families living with cystic fibrosis. To learn more about CF Queensland, Australia https://www.cfqld.org.au For more about CF Global Advocacy Alliance https://cfgaa.org.au For more about the European CF Society and the conferences they hold https://www.ecfs.eu Like, subscribe, and comment on our podcasts! 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