Megan Carmilani is the founder and President of Long Covid Families. For over thirty years she has navigated the challenges of being disabled with a poorly understood chronic illness. Megan’s childhood of missed diagnoses and confusing, debilitating symptoms gives her a unique insight into childhood chronic illness. It is this lived experience that guides the advocacy work and mission of Long Covid Families, to ensure that children are included in Long Covid research and have access to education and healthcare.
Over the last three years, Megan has spoken to hundreds of caregivers of kids with Long Covid, spearheaded two Long Covid Back to School conferences, and presented at the WHO/PAHO, the Global Interdependence Center, as well as the Woodcock Institute. She helped draft portions of the CARE for Long Covid Act (S3726) with Senator Tim Kaine’s office, started an initiative to connect pediatric Long Covid patients with research studies, and continues to lead efforts to educate and provide resources to the pediatric Long Covid community. Megan serves on the RECOVER Pediatric Coordinating Committee and holds an MEd in Curriculum and Instruction from Arizona State University has a background in education and legislative advocacy.
