Living With Cystic Fibrosis

CF Carriers: What We Thought We Knew—and What We’re LearningWhat Does It Really Mean to Be a CF Carrier? And the Heart Behind the Doctor.For years, we’ve been told that CF carriers are healthy. But what if the story is more complicated?I met Professor Nick Simmonds of Royal Brompton Hospital and Imperial College London at the European Cystic Fibrosis Society Conference (ECFS) in Lisbon, Portugal, in 2025. His presentation explored CF carriers, CFTR function, and what emerging research may be teaching us about the health of people who carry a CFTR mutation.In this conversation, Professor Simmonds explores some of the most intriguing questions in cystic fibrosis research, including whether having one CFTR mutation may have health implications for some people. His work has focused on complex CF diagnoses, CFTR-related disorders, and the development of new CF therapies. He has also played an important role in international clinical trials, the ECFS Diagnostic Network and Clinical Trials Network, and the UK CF Registry.But this conversation goes beyond the science.Professor Simmonds shares his deep love for the CF community, his passion for doing more for patients and families, and why he considers his patients family. His commitment to the people behind the diagnosis offers a heartfelt look at the personal side of medicine and the relationships that make this work so meaningful.And when I asked him who his heroes are in the CF community, I was pleasantly surprised with his answer!  He named two remarkable women!  Hear what he has to say about them. Join us for a conversation about groundbreaking questions in CF research, the future of our understanding of CFTR, and the extraordinary connections between a doctor and the community he cares so deeply about.To learn more about Dr. Bonnie Ramsey and Professor Margaret Hodson follow these links: Dr. Bonnie Ramsey and Dr. Margaret Hodson  Like, subscribe, and comment on our podcasts!Please consider making a donation: https://thebonnellfoundation.org/donate/The Bonnell Foundation website:https://thebonnellfoundation.orgEmail us at: [email protected] Watch our podcasts on YouTube: https://www.youtube.com/@laurabonnell1136/featuredNew: Shop our merchandise! https://thebonnellfoundation.org/product-shop/Thanks to our sponsors:Vertex: https://www.vrtx.comViatris: https://www.viatris.com/enRead us on Substack: https://substack.com/@lstb?utm_campaign=profile&utm_medium=profile-pageWatch our trailer of Embracing Egypt: https://youtu.be/RYjlB25Cr9Y

The power of Twinning!  What happens when countries work together as part of a mentoring program.What happens when a CF clinic in Brussels partners with a CF clinic in Romania? They learn from each other, and patients benefit.The CF Twinning Project, a mentoring program that connects CF centers across countries to share knowledge, experience, and new approaches to care.Dr. Elke De Wachter from Brussels shares how her team worked with Dr. Csilla Eniko Szabo in Romania, who cares for Patrick, the son of Oana (husband Mickey) Vivoid . Through this partnership, Dr. Szabo and her clinic were able to learn new respiratory techniques and approaches to help strengthen and modernize CF care.It’s a wonderful example of how collaboration can cross borders, and how sharing what we know can help create better care and better outcomes for people living with cystic fibrosis around the world. Like, subscribe, and comment on our podcasts!Please consider making a donation: https://thebonnellfoundation.org/donate/The Bonnell Foundation website:https://thebonnellfoundation.orgEmail us at: [email protected] Watch our podcasts on YouTube: https://www.youtube.com/@laurabonnell1136/featuredNew: Shop our merchandise! https://thebonnellfoundation.org/product-shop/Thanks to our sponsors:Vertex: https://www.vrtx.comViatris: https://www.viatris.com/enRead us on Substack: https://substack.com/@lstb?utm_campaign=profile&utm_medium=profile-pageWatch our trailer of Embracing Egypt: https://youtu.be/RYjlB25Cr9Y

What happens when doctors, researchers, CF families, friends, and supporters come together in one room?You get an incredible night of connection, stories, laughter, and hope.In this special Bonnell Foundation podcast, I’m bringing you conversations from our Sweet 16 Gala—from doctors and CF experts to families, friends, and the people who continue to stand beside the CF community.You’ll hear the voices and stories that made this night so meaningful.It’s more than a gala—it’s our CF community. And I can’t wait for you to hear it.  The connection is amazing! Like, subscribe, and comment on our podcasts!Please consider making a donation: https://thebonnellfoundation.org/donate/The Bonnell Foundation website:https://thebonnellfoundation.orgEmail us at: [email protected] Watch our podcasts on YouTube: https://www.youtube.com/@laurabonnell1136/featuredNew: Shop our merchandise! https://thebonnellfoundation.org/product-shop/Thanks to our sponsors:Vertex: https://www.vrtx.comViatris: https://www.viatris.com/enRead us on Substack: https://substack.com/@lstb?utm_campaign=profile&utm_medium=profile-pageWatch our trailer of Embracing Egypt: https://youtu.be/RYjlB25Cr9Y

I first met Stacey Fogarty-Brown when I decided to travel to Egypt to meet CF families and learn more about the CF community there. Stacey joined me on that journey, and together we saw firsthand the challenges facing people with CF around the world. Stacey is a Registered Dietitian Nutritionist at Michigan Medicine and a Certified Advanced Cystic Fibrosis Dietitian. She has spent years helping people with CF and their families navigate the complicated world of nutrition. I’m grateful we were together on that trip, and even more grateful that our friendship and shared passion for the CF community have continued ever since. Nutrition and CF: What Has Changed, and What Families Need to Know As a CF mom, I remember when nutrition was one of the biggest conversations we had at every clinic visit. Calories, fat, weight gain, it sometimes felt like everything revolved around getting enough food into my daughters. But CF care has changed dramatically, especially with the introduction of highly effective modulators like Trikafta. And with those changes, the conversation around nutrition has changed, too. Nutrition Isn’t One-Size-Fits-All One of the things Stacey emphasized is just how individualized nutrition needs to be for someone with CF. Two people can have the same mutations and still have completely different nutritional needs. Stacey also explained the difference between a registered dietitian and a nutritionist and why working with a dietitian who understands CF can be so important. Nutrition isn’t simply about following a list of foods. It’s about looking at the whole person, their health, their lifestyle, their culture, their food preferences and what their body needs. As Stacey says, “It’s very, very individualized.” That really resonated with me. As parents, we want answers and we want to know we’re doing the right thing. But with CF, sometimes the answer is simply: it depends. How Trikafta Has Changed the Nutrition Conversation We also talked about how much CF care has changed since modulators became available. For so many people with CF, Trikafta has been life-changing. We’ve seen improvements in health, growth and life expectancy, and that has changed the way families and care teams think about food. For years, the message was essentially: eat more, eat more calories, eat more fat. Today, the conversation can be much more balanced. Fruits and vegetables, overall nutrition and listening to your body’s hunger and fullness cues can all have a place in a person’s diet. And getting kids to start working out at a young age is crucial. That doesn’t mean nutrition is no longer important. Quite the opposite. It means we’re learning more about what people with CF need as their health changes. The Tricky Part: Weight, Food and Parenting This was probably one of the most important parts of our conversation for me personally. As a mom, there is a very fine line between making sure your child is getting the nutrition they need and creating anxiety around food. I look back now at some of the things I worried about with my daughters and realize there were food issues I didn’t even recognize at the time. When you’re constantly being told that your child needs to gain weight, it can be difficult to know where that responsibility ends and where normal eating begins. And now, with modulators and changes in weight and metabolism, some families are facing an entirely different set of challenges. Stacey and I talked about the importance of recognizing the psychological side of eating, body image and weight. Families need to feel safe talking about these issues without feeling judged. Your CF Team Should Be a Team Another message I took away from our conversation is that families shouldn’t have to figure this out alone. A good CF care team should include open communication between the person with CF, parents when appropriate, the dietitian, physicians and other members of the care team. And nutrition has to fit the individual, not the other way around. That can mean taking cultural traditions, religious practices, food preferences, finances and family dynamics into consideration. It’s about finding realistic solutions that work in someone’s actual life. Stacey said something I loved: “We’re just gonna take it a day at a time.” I think that applies to so much of living with CF. The CF Community Becomes Family Our CF community is indeed our family. Stacey talked about how CF families become part of the lives of the healthcare professionals who care for them. She said, “The CF families become our families.” I understand exactly what she means. There is something incredibly powerful about being around people who understand this journey. They understand the worry, the victories, the setbacks, the endless appointments, and the hope. Nutrition is just one piece of the CF puzzle, but it’s an important one. And as CF treatment continues to evolve, we have to be willing to evolve with it. For me, this conversation was a reminder that there isn’t one perfect way to manage nutrition with CF. There is learning, adjusting, listening and continuing to have honest conversations. And most importantly, families don’t have to do it alone. Listen to the full conversation with Stacey Fogarty-Brown to hear more about nutrition, CF, modulators, weight, food and the challenges families are navigating today. Like, subscribe, and comment on our podcasts!Please consider making a donation: https://thebonnellfoundation.org/donate/The Bonnell Foundation website:https://thebonnellfoundation.orgEmail us at: [email protected] Watch our podcasts on YouTube: https://www.youtube.com/@laurabonnell1136/featuredNew: Shop our merchandise! https://thebonnellfoundation.org/product-shop/Thanks to our sponsors:Vertex: https://www.vrtx.comViatris: https://www.viatris.com/enRead us on Substack: https://substack.com/@lstb?utm_campaign=profile&utm_medium=profile-pageWatch our trailer of Embracing Egypt: https://youtu.be/RYjlB25Cr9Y

A Lucky Diagnosis on Friday the 13thFriday the 13th is supposed to be unlucky. But for today’s guest, it may have been one of the luckiest days of her life.Chloe was diagnosed with cystic fibrosis just 13 days after she was born, on Friday the 13th. That diagnosis would shape nearly every chapter of her life: growing up with CF in the late 1990s and early 2000s, struggling with treatment adherence, becoming a wife and mother, discovering the life-changing impact of Trikafta, and navigating some of the darkest moments of her mental health.But there’s another side to that diagnosis.CF brought challenges, but it also brought people into her life who fought fiercely for her—including her mom, who was her greatest advocate. It brought her to a husband who stood beside her through illness and mental health struggles. And ultimately, it became part of a story that includes two children, a family she loves deeply, and a determination to keep moving forward even after unimaginable loss.This year, she lost her mom to stage 4 colon and lung cancer. At the same time, she was fighting her own battle with severe depression, hospitalization and psychosis. Watching her mother die was an experience she never expected—and one she says left her carrying PTSD and grief that she is still learning to navigate.Today, she is working her way back. She’s receiving Spravato treatments, beginning to feel stronger mentally, and trying to navigate the financial challenges that remain.And through all of it, she holds onto one simple truth: she is still breathing, and her children are happy and healthy.So maybe Friday the 13th isn't so unlucky after all.Today, we're talking about CF, treatment, love, motherhood, grief, mental health, resilience—and finding a reason to keep going.If you would like to donate to her Go Fund Me page: Link: Like, subscribe, and comment on our podcasts!Please consider making a donation: https://thebonnellfoundation.org/donate/The Bonnell Foundation website:https://thebonnellfoundation.orgEmail us at: [email protected] Watch our podcasts on YouTube: https://www.youtube.com/@laurabonnell1136/featuredNew: Shop our merchandise! https://thebonnellfoundation.org/product-shop/Thanks to our sponsors:Vertex: https://www.vrtx.comViatris: https://www.viatris.com/enRead us on Substack: https://substack.com/@lstb?utm_campaign=profile&utm_medium=profile-pageWatch our trailer of Embracing Egypt: https://youtu.be/RYjlB25Cr9Y

I met Lea Goldberger, the CEO of the Cystic Fibrosis Association of Israel at a conference in Lisbon, Portugal. The European CF Society Conference. She was not always in nonprofit leadership; she spent many years working in Israel’s high-tech and product world. She later moved into healthcare and social-welfare organizations, earned a master’s degree in nonprofit and community organization management from Hebrew University, and ultimately became the CEO of Israel’s Cystic Fibrosis Foundation. Her perspective is valuable because she has experienced technology, healthcare, advocacy and patient support. And as someone who leads a national CF organization, she has a unique view of what it takes to improve the lives of people with CF, not only through medical advances, but through policy, education, access and community. The CF community in Israel is diverse. There are approximately 600 to 700 people living with CF in Israel and more than 30% are part of Israel’s Arab community. Lea is a strong advocate for greater awareness, genetic testing, early diagnosis and newborn screening, particularly because earlier diagnosis can be so important now that highly effective CF treatments are available. At the conference I know she was upset because one of the people she knows in the CF community was very ill. This is not just a job for any of us, everyone is family. I am glad you get to meet my friend Lea.  Like, subscribe, and comment on our podcasts!Please consider making a donation: https://thebonnellfoundation.org/donate/The Bonnell Foundation website:https://thebonnellfoundation.orgEmail us at: [email protected] Watch our podcasts on YouTube: https://www.youtube.com/@laurabonnell1136/featuredNew: Shop our merchandise! https://thebonnellfoundation.org/product-shop/Thanks to our sponsors:Vertex: https://www.vrtx.comViatris: https://www.viatris.com/enRead us on Substack: https://substack.com/@lstb?utm_campaign=profile&utm_medium=profile-pageWatch our trailer of Embracing Egypt: https://youtu.be/RYjlB25Cr9Y

Rare disease connects more people than many of us realize.  While every diagnosis is unique, the journey often includes many of the same challenges: searching for answers, navigating the healthcare system, advocating for better care, managing complex treatments, and finding hope along the way. Cystic fibrosis is considered a rare disease because it affects fewer than 200,000 people in the United States, just like mitochondrial disease. Although these conditions are different, the experiences of patients and families often have much in common. Our guest is Michael Goldberg, a rare disease patient, advocate, entrepreneur, and author. Michael and I connected on LinkedIn, and I'm so glad he reached out because his story is one that will resonate with anyone whose life has been touched by a rare disease. Michael lives with a rare mitochondrial disease and has turned his personal experiences into a mission to help others. He's the Founder and CEO of 12 Brand | MediXo, a patient-led health technology initiative focused on medication adherence, dosing accuracy, and preventive health. He also helps fund research and community programs. Right by his side is his wife Judi. We talk with her about the challenges about being a caregiver, and how that can change a marriage. They're beautiful marriage and upbeat, positive attitude will inspire you. Michael is also the author of I'll Have Mine Rare and I'll Have Mine Rare: Growing Up Different. In this episode, we talk about advocacy, caregiving, resilience, and why the rare disease community is stronger when we learn from one another. Whether your family is affected by cystic fibrosis or another rare disease, I think you'll find inspiration and encouragement in Michael's journey. To get in touch with Michael Goldberg:  [email protected] Like, subscribe, and comment on our podcasts!Please consider making a donation: https://thebonnellfoundation.org/donate/The Bonnell Foundation website:https://thebonnellfoundation.orgEmail us at: [email protected] Watch our podcasts on YouTube: https://www.youtube.com/@laurabonnell1136/featuredNew: Shop our merchandise! https://thebonnellfoundation.org/product-shop/Thanks to our sponsors:Vertex: https://www.vrtx.comViatris: https://www.viatris.com/enRead us on Substack: https://substack.com/@lstb?utm_campaign=profile&utm_medium=profile-pageWatch our trailer of Embracing Egypt: https://youtu.be/RYjlB25Cr9Y

I Was Wide Awake for Dr. Kimberly Canter’s Presentation on Sleep and Cystic FibrosisI was wide awake during a presentation about sleep, but that’s exactly what happens when you hear Dr. Kimberly Canter speak about the connection between sleep and cystic fibrosis.As the mom of two daughters with CF, I know firsthand how elusive a good night’s sleep can be. For years, our nights included coughing, breathing treatments, medications, hospital stays, and the constant worry that comes with raising children with a chronic illness. Sleep wasn’t simply about feeling rested it was about survival, healing, and making it through another day.That’s why Dr. Canter’s presentation resonated with me, and it will with you.Dr. Kimberly Canter is a pediatric psychologist, Senior Research Scientist at Nemours Children’s Health, and Associate Professor of Pediatrics at Thomas Jefferson University. Her work focuses on improving the emotional and physical well-being of children and families living with chronic illnesses, including cystic fibrosis.One of the biggest takeaways? Sleep isn’t a luxury, it’s a critical part of CF care.Sleep Affects Every Part of LifeAs Dr. Canter explained, sleep influences nearly every aspect of our health.“Sleep impacts every single part of our life, of our health, at the physical level, at the mental level.”For people living with CF, sleep is often interrupted by persistent coughing, airway clearance treatments, sinus issues, medications, hospital routines, and the overall burden of managing a complex disease. Even when someone finally gets into bed, staying asleep can be difficult.Poor sleep doesn’t just leave someone feeling tired the next day. Research shows it can affect lung health, weaken the immune system, increase the risk of infections, and contribute to anxiety and depression.New Treatments, New QuestionsOne topic I found especially interesting was Dr. Canter’s discussion about CFTR modulators.These remarkable medications have transformed the lives of many people with CF, but researchers are also learning that some patients experience new or worsening sleep problems after starting these therapies. It’s another reminder that while treatments continue to improve, there is still much to learn about the day-to-day experiences of people living with cystic fibrosis.It’s More Than PhysicalDr. Canter also spoke about something that doesn’t receive enough attention: medical trauma.Repeated hospitalizations, frightening procedures, and years of living with uncertainty can leave lasting emotional effects. For some patients, those experiences contribute to PTSD-like symptoms, anxiety, and ongoing sleep disturbances.It’s a powerful reminder that caring for someone with CF means caring for both their physical and emotional health.Start the ConversationPerhaps the most practical advice Dr. Canter shared was also the simplest.“The most important initial step is to talk with your care team and make them aware that there is a problem.”Too often, families accept poor sleep as “just part of CF.” But it doesn’t have to be ignored. Whether it’s adjusting treatment schedules, exploring behavioral strategies, addressing anxiety, or making accommodations at school during particularly difficult periods, there may be solutions that can help.Why This MattersLiving with cystic fibrosis has changed dramatically over the past decade. People are living longer and healthier lives than ever before, thanks to extraordinary scientific advances. But quality of life matters just as much as longevity.Sleep is one of those everyday challenges that often flies under the radar, yet it influences physical health, mental health, relationships, school, work, and overall well-being.As a CF mom, I left Dr. Canter’s presentation with a deeper appreciation for something so fundamental—and a reminder that sometimes the conversations we need most are about the things we rarely talk about.If you or someone you love is living with cystic fibrosis, I hope this encourages you to ask about sleep at your next clinic visit. It could make a bigger difference than you realize.  Thank you. Like, subscribe, and comment on our podcasts!Please consider making a donation: https://thebonnellfoundation.org/donate/The Bonnell Foundation website:https://thebonnellfoundation.orgEmail us at: [email protected] Watch our podcasts on YouTube: https://www.youtube.com/@laurabonnell1136/featuredNew: Shop our merchandise! https://thebonnellfoundation.org/product-shop/Thanks to our sponsors:Vertex: https://www.vrtx.comViatris: https://www.viatris.com/enRead us on Substack: https://substack.com/@lstb?utm_campaign=profile&utm_medium=profile-pageWatch our trailer of Embracing Egypt: https://youtu.be/RYjlB25Cr9Y

Hi everyone,  The Bonnell Foundation’s mission has always been deeply personal. As we celebrate our Sweet 16 Night of Hope Gala on September 19th, it’s a perfect time to reflect on why this work matters so much.What started with a need to help families navigating cystic fibrosis has grown into a community of support, education, advocacy, and financial assistance. When Molly was diagnosed with CF, there were far fewer resources available to families. The Bonnell Foundation was created to help fill those gaps — from medical bills and hospital support bags to lung transplant grants, education scholarships, and so much more.Over the past 16 years, we’ve seen firsthand what that support can mean. Families have reached out to share how assistance with a bill, respiratory equipment, or a difficult hospital stay helped them get through a challenging moment. These aren’t simply programs — they can be lifelines for families when they need them most.And while cystic fibrosis continues to bring enormous challenges, there is also so much reason for hope. Research, new treatments, advocacy, and the dedication of families and organizations around the world continue to move the CF community forward.At the Bonnell Foundation, that hope is reflected in every dollar raised and every family we support. Our Sweet 16 Gala is more than a fundraiser. It’s a celebration of resilience, generosity, and community — and a reminder that together, we can make a difference.If you can join us on September 19th, your presence helps fuel this mission. And if you can’t attend, a donation can still make a meaningful difference for a family living with cystic fibrosis.Thank you for being part of this journey, for believing in our mission, and for helping us bring more support, more resources, and more hope to families living with CF. Like, subscribe, and comment on our podcasts!Please consider making a donation: https://thebonnellfoundation.org/donate/The Bonnell Foundation website:https://thebonnellfoundation.orgEmail us at: [email protected] Watch our podcasts on YouTube: https://www.youtube.com/@laurabonnell1136/featuredNew: Shop our merchandise! https://thebonnellfoundation.org/product-shop/Thanks to our sponsors:Vertex: https://www.vrtx.comViatris: https://www.viatris.com/enRead us on Substack: https://substack.com/@lstb?utm_campaign=profile&utm_medium=profile-pageWatch our trailer of Embracing Egypt: https://youtu.be/RYjlB25Cr9Y

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!Please consider making a donation: https://thebonnellfoundation.org/donate/The Bonnell Foundation website:https://thebonnellfoundation.orgEmail us at: [email protected] Watch our podcasts on YouTube: https://www.youtube.com/@laurabonnell1136/featuredNew: Shop our merchandise! https://thebonnellfoundation.org/product-shop/Thanks to our sponsors:Vertex: https://www.vrtx.comViatris: https://www.viatris.com/enRead us on Substack: https://substack.com/@lstb?utm_campaign=profile&utm_medium=profile-pageWatch our trailer of Embracing Egypt: https://youtu.be/RYjlB25Cr9Y