The CF Together Podcast

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 fibrosis

Pain 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.

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].

If 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.