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 CF — 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