2025 Impact Report
For Kids. For Answers. For Action.
This year, Long Covid Families strengthened its role as the national organization dedicated to children living with Long COVID. Through research, advocacy, and family support, we turned family experience into meaningful progress that helps children receive the recognition, care, and support they need.
Our Impact at a Glance
- 2 peer-reviewed publications in JAMA Pediatrics, downloaded more than 58,600 times
- More than 100 hours of meetings with researchers advancing pediatric Long COVID studies
- Reached approximately 175,000 people per month on social media
- Recommended low dose naltrexone (LDN) as a top treatment priority; a pediatric clinical trial is now moving forward
- 2nd Annual Pediatric Long COVID Awareness Week featured in Newsweek
- 2 Washington, DC advocacy trips with Senate meetings
Our Mission
We accelerate pediatric research, advance access to medical care, and work to ensure children with Long COVID receive the education and support they need. We stand with families so that no child is denied recognition, care, or opportunity because of this illness.
Our Pillars in Action
Our work connects research, medical care, and education so every system a child relies on moves in the same direction.
Research
We shape how pediatric Long COVID is studied and understood so that evidence reflects children’s real experiences and guides better care.
Medical Care
We turn research into resources families can use: guides for talking to doctors, managing symptoms, and advocating for care. We also collaborate with clinicians and researchers to expand recognition and improve access to appropriate medical support for children.
Education
We help families and educators understand how Long COVID affects children’s ability to think, focus, and learn, and we provide clear guidance on accommodations and supports so children can stay engaged in their education and connected to their school communities.
2025: A Year of Momentum and Meaning
Families powered every step of our progress. Together with researchers, clinicians, educators, and policymakers, we made measurable gains toward better recognition, stronger systems, and real support for children and their caregivers.
Research and Awareness
Aligned with our mission to accelerate pediatric research.
Long Covid Families helped define how pediatric Long COVID is understood, contributing to the first peer-reviewed studies that characterized the condition in children and continuing to guide national research priorities.
Our 2025 work builds on the 2024 coauthored study Characterizing Long COVID in Children and Adolescents, downloaded more than 57,000 times. That foundational research continues to inform how we connect emerging science with care, education, and public health.
In 2025, we shaped how the medical community and the public understand this illness.
Publication
Coauthored Characterizing Long COVID Symptoms During Early Childhood in JAMA Pediatrics, viewed more than 13,400 times, helping define how Long COVID presents in young children. Within 24 hours of publication, the findings were available on our website through a dedicated page written in clear, accessible language for families.
Collaboration
Held more than 100 hours of meetings with researchers to advance pediatric Long COVID studies, ensuring family priorities remain central to emerging science.
Outreach
Reached approximately 175,000 views per month on social media, translating research into clear, accessible information that connects science with family experience.
Why It Matters
Families now have credible, easy-to-understand information that bridges science and lived experience. This growing public awareness helps drive timelier care, recognition, and understanding for children.
Medical Care and Family Support
Aligned with our mission to advance access to medical care.
Families facing pediatric Long COVID often begin their journey alone. This year, Long Covid Families expanded the tools and connections that help parents navigate complex systems and find support.
- Expanded our website with a comprehensive library of resources to help families manage medical care, advocate within schools, and access home-based supports.
- Coauthored the JAMA Pediatrics patient page on pediatric Long COVID, downloaded 45,754 times, giving families practical tools to track symptoms and talk with clinicians.
Why It Matters
When families have access to accurate information and clear medical guidance, they can advocate effectively for their children and find care that meets their needs.
Education and School Support
Aligned with our mission to ensure every child receives the education and support they need.
For many families, school becomes one of the hardest parts of living with pediatric Long COVID. In 2025, Long Covid Families worked to make schools part of the solution rather than another barrier.
Research and Advocacy
Advocated for research into the educational impact of Long COVID, emphasizing the need to study how cognitive and physical symptoms affect learning and participation.
Public Health and School Partnerships
Shared information and resources with partners across the country, including presentations to Los Angeles County Public Health and Los Angeles Unified School District, helping health officials and educators recognize and respond to students’ needs.
Family Support
Guided families through the process of securing educational support, including accommodations and homebound services when symptoms made attendance difficult. Expanded the education section of our website and shared practical tools through social media, helping families and teachers work together to support children’s learning.
Why It Matters
Long COVID affects how children think, focus, and learn. By helping families and educators understand these challenges and apply appropriate accommodations, we ensure children can continue their education and stay connected to their school communities.
Advocacy and Policy
Aligned with our mission to accelerate research and ensure children receive recognition, care, and opportunity.
Federal Research Influence
- Since 2022, Long Covid Families has advocated for the inclusion of children in Long COVID clinical trials. When asked for treatment recommendations, we identified low dose naltrexone as a priority. An NIH funded pediatric clinical trial is now moving forward.
- Participated as a panelist at the NIH-funded RECOVER Initiative Treating Long COVID workshop, contributing to national conversations on treatment and clinical study design.
- Helped shape the proposal to extend the NIH-funded RECOVER Initiative’s pediatric observational study, ensuring families’ priorities were incorporated into ongoing federal research.
Awareness and Education
Hosted the second Pediatric Long COVID Awareness Week, featured in Newsweek, which included two webinars with leading pediatric researchers from the NIH-funded RECOVER Initiative and the Brain Inflammation Collaborative, and a Washington, DC advocacy trip. Dr. Rachel Gross of NYU Grossman School of Medicine and Dr. Alexandria Brugler Yonts, Director of the Post-COVID Program at Children’s National Hospital, joined us for Senate meetings to elevate the pediatric perspective.
Legislative Advocacy
- Published our first policy document outlining specific recommendations for pediatric research and care.
- Led two advocacy trips to Washington, DC for meetings with Senate offices to advance legislation that reflects the priorities of children and families living with Long COVID and ensures their rights to care and education remain central to federal action.
Why It Matters
Children are now represented in federal research priorities, with treatment trials reflecting advocacy from families and organizations who understand pediatric Long COVID firsthand. Our sustained presence ensures their needs continue to shape the systems designed to serve them.
What This Means
This year’s progress represents more than programs or publications. It reflects a growing national understanding that children with Long COVID must receive recognition, care, and opportunity.
Research is expanding, families are being heard, and systems are beginning to adapt. Behind every milestone is a child gaining access to the classroom, a parent finding answers, or a clinician seeing the patterns that guide better care.
The work is far from over, but momentum is building, and families are leading the way.
Looking Ahead to 2026
Building on our pillars of research, medical care, and education.
Long Covid Families will continue to lead efforts that strengthen systems of care, research, and education for children living with Long COVID.
In 2026, we will:
- Release the first Pediatric Research and Policy Agenda to guide national collaboration
- Strengthen partnerships with research and clinical institutions through our third annual Pediatric Long COVID Awareness Week
- Launch Caregiver Connect, a private app where caregivers can connect, share experience, and organize for better care
- Translate our website and resources into Spanish to expand access for families and schools across the country
Each of these efforts moves us closer to a future where every child with Long COVID is recognized, supported, and included in the systems that shape their care.
Thank You
To the families, clinicians, educators, researchers, and partners who stood with us this year, thank you.
Together, we are accelerating research, advancing care, and ensuring that children with Long COVID are seen, supported, and never denied recognition or opportunity.
