Parent Project Muscular Dystrophy

Working with PPMD, and the Power of Connection

For the past several years, I’ve had the honour of working with Parent Project Muscular Dystrophy (PPMD), an extraordinary organisation based in the USA, 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 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 or Becker MD, 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.

I’m honoured to be 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.

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