We advance research, medical care, and educational access for children with Long COVID.
Every decision starts with the child who will live with what comes next.
Every decision starts with the child who will live with what comes next.
Research is the ground we stand on.
Do the work that can make a difference for children now and in the future.
Families know what this illness has cost. We listen before we act.
Children were left out of Long COVID research and care. We close that gap. We bring what families report into research, and we bring what research shows to the people responsible for children’s medical care and education.
Our founder, Megan Carmilani, was watching the news when a pundit said children were not being affected by COVID and families did not need to worry.
Infections affect children. Some children develop infection-associated conditions afterward. If the public story began with children being fine, the children who did get sick would spend years without an explanation.
Megan had mono as a child, and it left her with a chronic illness that never went away. She knew she was sick, but she did not have access to support or care. It took 25 years to be properly diagnosed.
She worried other children would have the same experience. That day, she posted her own story publicly for the first time.
The messages started arriving. My sister’s son had COVID. He is not better. The doctors cannot tell us what it is. His symptoms sound like yours.
For many of those families, Megan was the first person to tell them that infection-associated conditions exist.
People were organizing around Long COVID and the research funding that would follow. Megan went to the meetings thinking she could help.
No one was talking about children.
She told a friend how frustrating that was. Her friend told her there was no reason she could not start her own nonprofit. All she had to have was the audacity to think she could.
Children needed someone to fight for them. She could not think of a reason it should not be her.
She knew the medical system would send families home without answers. She knew schools would treat a sick child as a child who was not trying. She knew that parents in the middle of it would not be in a position to organize. And she knew that if no one in those decision-making rooms was talking about children, children would not get the funding they so desperately needed.
Long Covid Families started in 2021.
We are no longer fighting our way into the rooms where research is decided. We have a seat at those tables and partners who work with us.
The fight now is on the other side. What research shows is not reaching the people who decide whether a child gets medical care or stays in school. That is the work: putting it in their hands, so that care, school, and childhood itself stay within reach.
A child should not have to spend months or years struggling before the adults around them understand what is happening.
Our Executive Board brings together lived family experience and professional leadership to guide Long Covid Families toward one purpose: helping children get the care and educational support they need.
Executive Board President
Megan Carmilani is the Founder and President of Long Covid Families, with 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 a deep understanding of the challenges children and families face.
She serves as a voting member of the NIH RECOVER Pediatric Coordinating Committee and contributes to the RECOVER Community Engagement Group, helping families 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 the decisions that shape their care, education, and lives.
Executive Board Member
Rochelle Wilensky brings more than 20 years of experience in domestic, international, and arts education. Based in Charlotte, North Carolina, she directs a part-time school serving children and families in a rural community. Her work has expanded educational access through programs supporting girls, minority students, refugees, and communities affected by conflict.
She holds a B.F.A. from Boston University and an M.Ed. in International Education Policy from Harvard. Rochelle joined Long Covid Families in honor of her two children, including one significantly impacted by Long COVID. She brings both professional expertise and family experience to helping children receive the educational support they need.
Executive Board Member
Kelli Coviello has more than 30 years of experience strengthening operations, improving organizational effectiveness, and supporting sustainable growth. She has worked with Fortune 500 companies, educational institutions, and nonprofit organizations, bringing expertise in governance, fundraising, communications, and operations to Long Covid Families.
As the parent of a teenager living with pediatric Long COVID, Kelli understands the barriers families face in healthcare and education systems. She is committed to ensuring lived experience informs governance and to strengthening the organization’s ability to advance educational access, practical resources, and systemic change for children with Long COVID.
Our Scientific Board brings together independent scientists, pediatric clinicians, and clinic directors who strengthen the scientific quality of our work, advising on pediatric Long COVID research, clinical care and access, and the school and policy systems children depend on.
Fondazione Policlinico Universitario A. Gemelli IRCCS; Università Cattolica del Sacro Cuore
Pediatric Infectious Disease Specialist and Researcher
NYU Grossman School of Medicine
Pediatrician and Clinical Researcher; Director of Research, Division of General Pediatrics; Director of Pediatric Research, RECOVER Clinical Science Core
DePaul University
Psychologist and Researcher; Director, Center for Community Research
Kennedy Krieger Institute; Johns Hopkins University
Pediatric Neurologist and Researcher; Director, Pediatric Post-COVID-19 Rehabilitation Clinic
Children’s Hospital Los Angeles; Keck School of Medicine of USC
Pediatric Infectious Disease Specialist and Researcher
Columbia University
Pediatrician and Population Health Researcher; Chair, NIH RECOVER Pediatric Coordinating Committee
Rutgers Robert Wood Johnson Medical School
Professor and Vice Chair for Academic Development; Director, Pediatric Population Health, Quality, and Implementation Sciences
Children’s National Hospital; George Washington University
Pediatric Infectious Disease Specialist; Director, Pediatric Post-COVID Program
