Working together in 2024, Long Covid Families, the families we support, and you, our supporters, made major strides for children with Long Covid and the families who care about them.
Here’s a look back at our top 10 highlights:
- Advocacy by Long Covid Families ensured that children and caregivers were written directly into the Long Covid Moonshot Act, sponsored by Sen. Bernie Sanders and Reps. Ayana Pressley and Ilhan Omar. Through our advocacy, we ensured that children will not be left behind in the quest to understand and treat Long Covid.
- Long Covid Families met regularly with pediatric Long Covid researchers to shape and inform research agendas, community engagement and communicating results. We partnered closely with the Pediatric RECOVER initiative on the launch of its seminal study, Characterizing Long Covid in Children and Adolescents. Megan Carmilani, LC Families Founder, is a co-author on the study and a voting member of the RECOVER pediatric coordinating committee, which plans, manages, and monitors the scientific progress of and operations.
- Research depends on the generosity of trial participants. In 2024, Long Covid Families launched Research Connect, a newsletter for families interested in participating in pediatric Long Covid research. You can sign up here.
- Our families face the biggest challenges with access to appropriate medical care and schooling. This year, Long Covid Families launched two pivotal resource hubs for our families on schools and Long Covid and caring for children with Long Covid.
- This year, we launched Pediatric Long Covid Awareness Week to highlight the unique challenges children face. The campaign included impactful events like building lightings, educational webinars, advocacy calls, and community reflections, bringing national attention to pediatric Long Covid and empowering families to take action.
- Throughout the year, LC Families worked with researchers, children and families with Long Covid, the media, and others, to rally attention to the needs of kids with Long Covid. In March 2024, Long Covid Families launched a Long Covid Art Gallery, highlighting art by children living with Long Covid. The Gallery provides a vivid window into the world of children and adolescents who are navigating the complexities of Long Covid.
- Community engagement, support and advocacy for children with Long Covid and their families is at the core of our mission. In 2024, LC Families continued to grow our membership, launched a completely new website with state-of-the-art resources, and extended our social media reach, adding Threads to the ways we communicate with and engage families experiencing Long Covid.
- LC Families continued to foster an active and engaged community through our Facebook group, where parents and allies of children with Long COVID come together to discuss advocacy and research initiatives. The group is a hub of action, empowering members to collaborate on key advocacy efforts and stay informed about the latest developments in pediatric Long COVID research. Through this platform, we’ve helped create a space for sharing resources, strategies, and support, ensuring that our community remains focused on driving meaningful change for children impacted by Long COVID.
- Keeping the needs of children and families in the news is a critical part of advocacy. Partnering with researchers and reporters, LC Families influenced and appeared in media coverage throughout the year; we are especially proud of our partnership with RECOVER researcher Melissa Stockwell on this important interview on Long Covid in kids, and featuring LC Families co-founder Megan Carmilani on this World Health Network podcast, as well as the press releases we issued throughout the year.
- Sustainability of our organization contributes to sustainability of our mission. We’re honored to round out our top ten by sharing that Long Covid Families welcomed four new powerhouse Board members this year: Nandini Raj, Elene Rohner, Charonda L. Johnson, and Rochelle Wilensky. Meet them here!
