The CF Together Podcast

This episode of the CF Together podcast is a special re-release, originally published on 13 February 2021 as part of the CF Strong iniatitive.Host Keegan Bakker, former radio presenter and now CEO of Audata sits down with Peter Oxford, producer of Showcase (the Australian Dance Championships) and cabin crew member for Virgin Australia.Peter shares his experience of growing up living with cystic fibrosis (CF) and building a dynamic career in the dance industry. From running his own studio to travelling the world, his story reflects resilience, determination, and a commitment to inspiring young people including people living with CF.

In this episode of the Stronger Together series, Dr Keith and Adam are joined by Tamarah Katz, Senior Respiratory Dietitian at Sydney Children’s Hospital and researcher at the University of New South Wales.With over 15 years’ experience working alongside families of children living with cystic fibrosis, Tamarah shares her insights into how nutrition in CF care is evolving. From the traditional “legacy” CF diet to the impact of CFTR modulators, she explores why it’s time to rethink how we approach food, health, and long-term wellbeing.Tamarah also discusses her groundbreaking research focused on improving diet quality in children with CF, including developing new nutritional guidelines, understanding family perspectives, and co-designing practical, real-world dietary strategies.This episode offers valuable guidance for parents, carers, and the broader CF community, while highlighting the future of nutrition in CF care and its role in supporting healthier lives.Tamarah Katz latest research Consensus-based guidance for the nutritional management of children with cystic fibrosis on ELEXACAFTOR/TEZACAFTOR/IVACAFTOR - PubMed

Kate joins us at an exciting time for the organisation, bringing fresh energy, strong leadership, and a clear vision for the future of CF Together. In this conversation, we take a moment to get to know Kate, her background, what drives her, and why she’s so passionate about advancing progress for the CF community.From strengthening connections to shaping what’s next, Kate shares her hopes for the future and what Stronger together really means in action.Whether you’re part of the CF community, a supporter, or simply curious about where we’re headed, this is a great opportunity to meet the person leading our next chapter.

In the first episode of our Stronger Together series, Dr Keith Ooi and Adam Holmes are joined by Dr Bernadette Prentice for an open and informative conversation about Cystic Fibrosis Related Diabetes (CFRD) They also discuss the realities of treatment burden when living with CF, in particular the impact of modulator treatments.They explore what CFRD is, how it’s diagnosed and managed, and the impact it can have on daily life. Adam shares his lived experience, while Dr Prentice emphasises that every person living with CF is unique, and that treatment plans work best when they are personalised to each individual’s circumstances and needs.This episode is for people living with CF, families, carers, and anyone wanting to better understand the challenges and strengths within our community. It’s a conversation grounded in expertise, compassion, and connection reminding us that we are STRONGER TOGETHERDr Bernadette Prentice is a Paediatric Respiratory Physician in Sydney and a Fellow of the Royal Australasian College of Physicians. She completed her Respiratory Medicine training at Sydney Children’s Hospital and The Children’s Hospital at Westmead and holds a Master’s of Public Health and a PhD in Cystic Fibrosis. Dr Prentice is a Conjoint Lecturer at the University of New South Wales, teaching medical students, and has received awards including the Thoracic Society of NSW/Vertex Paediatric Clinical Fellowship and a National Health and Medical Research Council Scholarship. She has published widely on children’s lung conditions, including CF, asthma, and chronic cough, and has presented her research at national and international conferences. Her clinical interests include children’s asthma, recurrent cough, and chest infections.Professor Keith Ooi is a Professor of Medicine at the University of New South Wales and a Consultant Paediatric Gastroenterologist at Sydney Children’s Hospital, Randwick. An internationally recognised expert, he specialises in gastrointestinal, pancreatic, nutritional, and liver conditions in children, including paediatric gastroscopy and colonoscopy. A Fellow of the Royal Australasian College of Physicians and the American Gastroenterology Association, Prof Ooi has received numerous national and international awards for his clinical and research contributions. He holds a PhD for his work in cystic fibrosis and pancreatic diseases and is a world-leading researcher in CF, paediatric pancreatic disorders, and the gut microbiome, with over 200 publications and major research funding from NHMRC and NIH.Adam Holmes is a musician who plays and teaches the Drums. He is the drummer for an Australian pop band called EGOISM from Sydney, New South Wales.

In this FINAL episode of the Living Longer series, Kelly Exner, Clinical Services Manager, looks back and shares valuable insights on navigating this next stage of life with cystic fibrosis (CF). Drawing on her clinical experience and deep connection to the CF community, Kelly explores the challenges, opportunities, and evolving needs that come with living longer.She offers practical guidance on finding the right supports, building strong care networks, and advocating for your wellbeing while also acknowledging the emotional and personal aspects of this transition. This episode is a thoughtful and reassuring conversation for anyone seeking clarity, confidence, and connection as they move into this next chapter.

In this episode of the Living Longer with CF, Nardia, Jade and Louisa share their lived experiences of navigating careers while living with cystic fibrosis. They speak openly about balancing work with health needs, managing energy and treatment schedules, and how career goals can shift over time.Through honest conversation, they explore workplace disclosure, advocating for flexibility, navigating setbacks, and redefining success in ways that support both wellbeing and purpose. This episode offers reassurance, insight, and connection for anyone navigating work and identity while living with CF.The views, experiences or comments shared in these stories are not medical advice and may not reflect opinions or beliefs of CF Together. Always seek the guidance of your doctor or other qualified health professional with any questions regarding your health. If you need any support, contact the National CF Support Line on 1300 CF HELP (23 4357).

In this episode in the Living Longer series, Nardia, Jade and Louisa come together to share their lived experiences of living longer with cystic fibrosis(CF), with a focus on nutrition and exercise. They speak honestly about what has changed over time, what’s helped (and what hasn’t), and how their relationship with food, movement, and their bodies has evolved across different stages of life.Through personal stories and reflection, they explore the practical and emotional realities of sustaining health, adapting routines, and finding balance all while navigating the complexities of CF, Transplant and CF Related Diabetes (CFRD). This episode centres real voices from the community, offering reassurance, insight, and connection for anyone figuring out what living longer with CF looks like for them.

In this honest and informative episode of the CF Together Podcast, Jade and Louisa share their lived experiences of CF-related diabetes (CFRD). They speak openly about diagnosis, daily management, and the challenges of balancing blood sugars alongside the already complex realities of living with cystic fibrosis.Through personal stories and reflection, Jade and Louisa explore the physical and emotional impacts of CFRD, how it affects identity and independence, and what they wish they’d known earlier. This episode offers reassurance, practical insight, and a strong sense of connection for anyone navigating CFRD or supporting someone who is. A reminder that lived experience matters, and that no one has to navigate CFRD alone.

In this moving episode of the CF Together Podcast, Nardia shares her experience of cancer with honesty, courage, and deep reflection. She speaks openly about diagnosis, treatment, and the emotional toll cancer can take especially when navigating it alongside other health challenges.Through her story, Nardia explores resilience, vulnerability, and the importance of support, while offering insight into how cancer reshapes identity, priorities, and everyday life. This episode creates space for understanding, compassion, and connection, and will resonate with anyone affected by cancer, whether personally or through someone they love.

Living longer with cystic fibrosis (CF) means navigating life stages that weren’t always part of the conversation including menopause. In this episode of Living Longer with CF, Nardia, Louisa and Jade share their lived experiences of menopause, speaking openly about the symptoms they faced, the impact on their bodies, and how they’ve managed this transition alongside CF.Through honest reflection and shared wisdom, this conversation sheds light on an often overlooked topic, offering reassurance, validation and practical insights for others walking a similar path. Whether you’re experiencing menopause now, approaching it, or supporting someone who is, this episode creates space for understanding and reassurance.

In this insightful episode, Nardia, Jade and Louisa sit down to unpack the complex, emotional, and deeply personal journey of transplant while living with cystic fibrosis. They discuss what it’s really like to navigate the decision-making process, the hope and uncertainty that come with waiting, and the life-changing reality of receiving a transplant.With honesty and heart, they explore the physical, emotional, and relational impacts of transplant, the gratitude and grief that often coexist, and the importance of support throughout every stage. Their conversation offers clarity, comfort, and connection for anyone wanting to better understand the transplant pathway within the CF community.This episode is an empowering reminder that every transplant story is unique and that sharing these experiences helps us all feel less alone.If you’re interested in learning more about transplant through the lived experiences of our community, you can read additional stories here Catherines StoryChris's StoryEmmanuelle's StoryThe views, experiences or comments shared in these stories are not medical advice and may not reflect opinions or beliefs of CF Together. Always seek the guidance of your doctor or other qualified health professional with any questions regarding your health. If you need any support, contact the National CF Support Line on 1300 CF HELP (23 4357). 

⚠️ Trigger Warning: This episode discusses themes of death, dying well, and end-of-life planning within the context of cystic fibrosis. These conversations can be deeply emotional and may be difficult for some listeners. Please take care while listening and pause or step away if you need to.In this powerful episode of the CF Together Podcast, Nardia, Jade and Louisa open up an honest, compassionate conversation about what it means to die well while living with cystic fibrosis. Together, they explore the importance of planning ahead, communicating wishes, finding comfort, and prioritising dignity and choice. With vulnerability and wisdom, they share personal reflections, fears, and practical insights along with the unexpected sense of peace that can come from speaking openly about end-of-life care.This episode gently encourages listeners to move toward conversations many avoid, helping us understand how talking about dying can shape the way we live, love, and support each other through the realities of CF.The views, experiences or comments shared in these stories are not medical advice and may not reflect opinions or beliefs of CF Together. Always seek the guidance of your doctor or other qualified health professional with any questions regarding your health. If you need any support, contact the National CF Support Line on 1300 CF HELP (23 4357). 

In this episode of the CF Together Podcast, we speak with Nardia, Jade, and Louisa about living with chronic pain while managing cystic fibrosis. They share honest insights into the physical and emotional challenges of daily life, as well as the strategies they use to maintain their wellbeing, stay active, and manage pain alongside their treatments. Through their stories, we highlight the importance of self-care, support networks, and accessing professional care when needed. This conversation explores practical ways to manage chronic pain, promoting health, resilience, and quality of life for those living longer with CF.

Welcome to the CF Together Podcast and our special eight-part series, Living Longer with CF, a deep exploration into what it truly means to live a longer life with cystic fibrosis. In this series, we dive into the important and often under-discussed parts of life with CF, including diabetes, menopause, transplant, careers, chronic pain, cancer, and dying well. Through each episode, you’ll hear directly from three incredible women, Nardia, Jade, and Louisa, who share their lived experiences with honesty, humour, and heart. Their stories reveal that living longer with CF brings new challenges, but also new strengths, perspectives, and possibilities. Together, we’re opening up meaningful conversations about what it truly means to live longer with CF and how we can support one another along the way.

In this episode, we meet Kaitlyn, a forensic professional, devoted mum to 20-month-old Cooper, and someone living with cystic fibrosis. Kaitlyn opens up about the realities of juggling a demanding career, motherhood, and her health sharing honest reflections on “mum guilt,” resilience, and redefining what balance really looks like. Her story is a powerful reminder that living with CF doesn’t mean slowing down it means finding new ways to thrive.

Lyndall Grace, our host for this episode of the CF Together Podcast, interviews Taylah about Body Image. Take a listen as they talk about their body image battles through the years - from school kids through to adulthood, now on modulators. Following Lyndall and Taylah, Raphael catches up with Julianna, a dietitian specialising in body image. Julianna has been working in CF over the past 15 years and offers a wealth of knowledge in her chat with Raph.

In this heartfelt episode, host Lyndall Grace speaks with Mandy, early childhood educator, CF Together team member, and mum to four-year-old Rory, who lives with cystic fibrosis (CF). Mandy shares the emotional experience of Rory’s diagnosis through newborn screening, describing how she felt deeply overwhelmed then she and her partner focused on working together as a team, drawing on the strength of their family unit to find creative, consistent ways to care for Rory.Mandy reflects on how her early childhood background has shaped her parenting transforming daily cystic fibrosis care into moments of connection, play, and learning. From turning physio into a game to using visual schedules and social stories, Mandy has adapted familiar tools to support Rory’s development and sense of agency.She also talks about the importance of whole-family wellbeing and how advocacy starts at home with routines that work for everyone, shared responsibilities, and open communication. Her story is a beautiful reminder that with love, teamwork, and creativity, families can find strength and joy even in the face of complex health challenges.This episode is filled with warmth, insight, and practical tips for families navigating life with cystic fibrosis.

In this episode of the CF Together podcast, you will hear two heartfelt and powerful conversations from within the cystic fibrosis community.First, Lyndall Grace, who lives with cystic fibrosis, speaks with Savannah May about her incredible journey to motherhood. Savannah shares her experiences with IVF, the challenges and triumphs of parenting with CF, and the unexpected joy of conceiving her second child naturally after starting Trikafta.Then we hand the mic to Raphael Recht, who explores the often-overlooked topic of chronic pain in CF. He’s joined by joined by Anastasia Ward and Dr. Keith Ooi, who’ll walk us through their research findings on chronic pain in C a topic that’s gaining much-needed attention.And finally, Kelly Exner, Clinical Services Manager at CF Together, will talk about practical pathways to accessing help for chronic pain management.Follow here for more on Anastasia Wards Research into Chronic pain living with cystic fibrosisPain in adults with cystic fibrosis – Are we painfully unaware? - Journal of Cystic Fibrosis

In this episode, we tackle the tough, personal, and often uncomfortable questions that don’t always get talked about when we visit our cystic fibrosis (CF) team—those questions that many are thinking but may not know how to bring up.Should I wear protection during sex?Why do I keep getting thrush?Is vaping really that risky for someone with CF?What’s with the smelly farts?Can I kiss someone who has a cold?We’re joined by Kate, a CF Clinical Nurse Consultant, who gives expert, honest answers in a quick-fire round designed to break down stigma and bring clarity to tricky topics. Whether you’ve had these questions yourself or want to better understand the realities of CF, this episode is here to open the conversation—with respect, care, and zero judgement.We may talk cover topics that you could find triggering. If you would like to speak to someone, contact the National CF Support Line on 1300 CF HELP (23 4357) or email one of our support team at CFTogether on [email protected].

Finding your voice to self-advocate can feel overwhelming at times. Gen, Gloria, and Kelly share valuable insights to help navigate the first steps in confidently asking for what you need.

In this episode Stephanie Quattromani, Executive Manager, Services, Care and Research at CF Together catches up with Alison Archibald from Victorian Clinical Genetics Services, and Belinda McClaren from the Murdoch Children's Research Institute (MCRI) to talk about carrier testing and carrier screening. This episode covers the difference between carrier testing and carrier screening, why people may consider each option, and how you can access these services. Links mentioned throughout the episode include: CF Together Support - https://www.cftogether.org.au/cf-support Human Genetics Society of Australiasia - https://www.hgsa.org.au/ Murdoch Children's Research Institute - https://www.mcri.edu.au/ Take a listen and if you like the show please rate and subscribe. Got an idea for future episodes, or want to be involved, drop us a line at [email protected].

In our first episode of The CF Together Podcast, Raphael catches up with James and Davie to talk about their path to fatherhood and living with cystic fibrosis (CF). This episode will make you laugh, squirm and maybe even cry. It's a candid and raw discussion about the IVF journey that led to the magical moment when they both became Dads. The CF Together Podcast also features expert information at the end of each show. In this episode Stephanie Quattromani, Executive Manager, Services, Care and Research at CF Together talks about fertility and men with CF. Take a listen and if you like the show please rate and subscribe. Got an idea for future episode, or want to be involved, drop us a line at [email protected].

Welcome to Season 1 of the CF Together Podcast.CF Together is a national organisation dedicated to improving the lives of people living with cystic fibrosis (CF), advancing CF care and ultimately finding a cure.We know the importance of sharing stories and creating community for people living with CF, that's why we are excited to welcome you to our first season of the CF Together Podcast.In upcoming episodes you will hear from members of the CF community, researchers and clinicians, covering topics such as fertility, parenting, ageing, menopause, chronic pain, life after transplant and a lot more. Subscribe to this Podcast to keep updated with the latest research as well as stories of lived experience from our community to help you feel more connected and supported, whether you're living with CF, or loving someone with CF.If you'd like to share your thoughts or have suggested topics for the podcast, we'd love to hear from you. Please drop us a line at [email protected] you enjoy this Podcast, don't forget to subscribe, rate and review.If you would like to make a donation to support the work of CF together, please visit www.cftogether.org.au.We are CF Together, changing futures together.