Inside the conversations that could shape the future of care, research, and protections for children.
A Trip Fueled by Purpose
A thirteen-year-old boy living with Long COVID slid a drawing across the table to a Senate staffer — a meticulously sketched 2015 Ford F-450/Horton AMR ambulance. “It is for all the kids who had to ride in ambulances,” he said.
Around the table, another child spoke of exhaustion that keeps them home, pain that cuts through their day, and the longing to return to the life they knew.
In July, during Pediatric Long COVID Awareness Week, Long Covid Families brought these voices to Capitol Hill to confront a national crisis. Millions of children in the United States are still waiting for answers, care, and a path forward. We came with one purpose — to make change happen.
Why We Went
While research continues to advance, families are living the crisis now. Every day without answers means children miss school without support, go without specialized medical care, and face systems that were never designed for them.
We asked for:
Investment in pediatric research so children are not left without answers for years.
Expanded access to clinical care so families can find knowledgeable providers no matter where they live.
Policies that protect children in school so learning is possible even when symptoms are relentless.
In every conversation, one fact was undeniable. Pediatric Long COVID is still receiving far too little attention and far too few resources. That must change.
Experts Added Strength to Our Message
Two leading experts in pediatric Long COVID joined Long Covid Families in Washington, bringing scientific evidence alongside lived experience.
Dr. Alexandra Yonts, director of the post-COVID program at Children’s National Hospital, spoke about the urgent need for specialized care. With only a few pediatric programs nationwide, countless families have no place to turn.
Dr. Rachel Gross, a researcher at NYU Grossman School of Medicine, shared research showing how children’s symptoms appear and vary by age. These findings are helping to define pediatric Long COVID in ways that can shape treatment and policy.
Every chart, every data point, and every unanswered question comes back to the same truth — children are waiting for care, for answers, for a future they can count on. The time to act is now.
The Human Impact Was Unmistakable
A mother spoke about her son missing years of school because he is too sick to attend. “He wants to be there, but his body will not let him,” she said.
Beside her, another parent described how her five year old daughter, once active and energetic, suddenly could not walk after a COVID infection. What followed was a long road of doctors’ appointments and medications, each one an attempt to restore some measure of normalcy.
A third parent explained how weeks can turn into months while waiting for an appointment with a specialist who understands this condition. For her family, that specialist is six hours away.
In the middle of it all, the boy’s ambulance drawing stayed on the table. No one commented on it, but eyes kept returning to it. It was a quiet reminder of how serious this illness can be for children.
Turning Meetings Into Action
That day on Capitol Hill, we reminded decision makers that children with Long COVID cannot be left out of the national conversation.
Policy briefs were requested and nine Senate offices asked for future meetings. These are not promises on paper. They are openings for change. What happens next depends on whether we keep showing up.
Our next trip to Washington is already in motion. Several of the families who made their way here once are ready to return and new families are ready to join them. Every meeting we take and every connection we build brings us closer to federal funding for pediatric research, better access to care, and stronger protections for children in school.
This is a moment we cannot afford to lose.
Join Us
The conversations in Washington have begun. Now we need your voice to carry them forward.
Send a letter to Congress urging action for children with Long COVID. When more voices speak together, it is harder to turn away.
Add your name today and help turn these conversations into the care, research, and protections every child deserves.
