When my husband Tony’s health started to become an increasing concern, a few things happened – we started having to balance many more appointments and specialists and I became a caregiver. We had no idea of how much ‘new work’ the healthcare system expects from patients and families. We thought of our healthcare system as a connected system – that could clearly communicate among its parts. Wowee Wally! Were we wrong. Patients are given tasks and expectations – but no tools. It’s still too often left to us as patients and families to sort things out for ourselves. My part in this is to don my science teacher hat and help develop tools and resources to help empower patients and families better navigate their own journeys.