Parent Project Muscular Dystrophy

Lighting the Way: My Work with PPMD and the Power of Connection

Every year, I board a plane from Australia to the USA with a full heart and a suitcase packed with hope, ready to step into a community that continues to teach me more about courage, connection, and the human spirit than I could ever have imagined.

For the past several years, I’ve had the honour of working with Parent Project Muscular Dystrophy (PPMD), an extraordinary organisation dedicated to improving the lives of individuals and families affected by Duchenne and Becker muscular dystrophy. My role as a Lighthouse Group Facilitator places me right in the heart of these conversations, holding space for parents and caregivers to gather, reflect, laugh, cry, and be deeply seen.

The Lighthouse Groups are more than support sessions, they are sacred spaces for storytelling, shared wisdom, and emotional recalibration. Each group, whether it's parents of newly diagnosed children or caregivers of adults living with Duchenne, comes with its own rhythm and raw beauty. We explore themes like identity, advocacy, language that helps or harms, and the ongoing challenge of balancing grief and hope in the same breath.

These sessions don’t just happen online. I’m often invited to the annual PPMD Conference, the Healthcare Summit, and other key events across the US to facilitate workshops, connect in person with the families I’ve grown close to, and collaborate with professionals who are working tirelessly to improve care outcomes. Travelling for this work is never just about the miles, it’s about showing up, heart-first, and being part of something much bigger than myself.

I speak often about the power of language- how the words we use in healthcare can either empower or diminish, how communication can be an act of care in itself. PPMD understands this deeply. Their willingness to invest in programs that centre compassion, communication, and human connection is one of the many reasons I’m proud to be a part of their ecosystem.

Each time I return home, I carry with me new stories, renewed purpose, and the quiet strength of the families I’ve met. Working with PPMD reminds me that trust, care, and genuine connection aren’t extras, they’re essentials.

And when the next invitation comes to gather again, whether in a Zoom room or a hotel ballroom across the world, you can bet I’ll be there, with an open heart and a suitcase packed for purpose.