About Us
We advance research, medical care, and educational access for children with long COVID.
A world where every child with long COVID has the care and education to thrive.
We center the voices and experiences of children, ensuring every approach to care, research, and education reflects their unique needs.
We support families through every challenge, providing understanding, guidance, and resources that help them navigate care and education with strength.
We work to eliminate barriers in care, education, and research so every child and family has fair access to support and opportunity.
We help shape and advance pediatric research that deepens understanding and drives better outcomes for children with Long COVID.
We build a national community of families and advocates, raising awareness and driving policy change that improves children’s lives.
Long Covid Families was founded in response to a growing crisis. As parents and children began sharing their stories, it became clear that families were navigating the long-term effects of COVID without support or answers.
Families recognized the patterns early. Through connection, shared experience, and determination, those conversations grew into the creation of a national nonprofit focused entirely on children’s needs.
Today, family voices remain at the center of everything we do. They inform our priorities, drive our advocacy, and guide our push for research, medical care, and education that reflect the full reality of pediatric Long COVID — so no child is invisible and no family is left to face this alone.
Together, we strive to improve the quality of life for families affected by Long COVID and work towards a future where every family receives the support they deserve.
Founder, President
Megan Carmilani is the Founder and President of Long Covid Families. She has more than 20 years of experience in patient advocacy and a background as a public school teacher. Living with infection-associated illness since childhood gives her deep perspective on pediatric chronic illness. She serves as a voting member of the NIH RECOVER Pediatric Coordinating Committee and contributes to the RECOVER Community Engagement Group, ensuring families help shape national research. Guided by the belief that lived experience should drive lasting change, Megan works to ensure children and families have a voice in every decision that shapes their lives and is committed to building a future where their needs are recognized in every system.
Board Member
Board Member
Board Member
