About Us

Empowering Families, Advancing Research, and Building a Brighter Future for Children Affected by Long COVID.

Our Mission

We accelerate pediatric research, expand access to care, and ensure safe and appropriate access to education and essential medical care so every child with Long COVID has the support they need. We stand with families so no child is denied recognition, support, or opportunity because of this illness.

Our Vision

A world where every child with Long COVID is fully recognized, supported, and protected — in research, in medical care, and in education.

Statement of Values

child-centered

We prioritize the unique needs of children, ensuring they receive timely and effective care tailored to their developmental stages.

compassion & support

We are committed to providing compassionate support to
families, fostering resilience and hope throughout their journey.

Equity & inclusivity

We advocate for equitable access to resources and treatments for all children and families affected by pediatric Long COVID.

research & innovation

We advocate to advance research to understand, treat, and prevent pediatric Long COVID, driving
innovations that improve children’s health outcomes.

community & advocacy

We strive to build a supportive community, raise awareness, and advocate for policies that improve the lives of families dealing with pediatric Long COVID.

Our Story

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.

 

Meet Our Executive Board

Our Executive Board at Long Covid Families is made up of patients and caregivers. Sometimes both. Their personal experiences with Long Covid drive their passion and dedication. Each board member brings unique insights and a deep commitment to our mission.

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.

KathySchuhPhotography-ElhamRaker-14

Elham Raker

Board Member 

Elham Raker from Los Angeles, California, is n integrative medicine pediatrician, parent coach, mother and caregiver to her teenage daughter living with Long COVID since 2022. After seeing how difficult it was for her two ohysican family to get medical care in theor own state, she has become passionate about advocating for the millions of kids suffering from long covid, either undiagnosed or not able to access care. She is using her knowledge as a physician along with her lived experience to bring more awareness and hopefully more answers and treatment for Long COVID in children.

Rochelle Wilensky

Board Member

Rochelle Wilensky lives in Charlotte, NC, and has over 20 years of experience in domestic, international, and arts education. She is currently the director of a part-time school in rural North Carolina, where she works with children of all ages and their families. Previously, Rochelle worked in local, national, and international organizations based in NYC, Boston, Washington, DC, Chicago, Santa Fe, NM, and Jerusalem, developing creative educational programs domestically and in the Middle East and North Africa. Whether focused on girls’ access to education, gifted education for minority students, coexistence and arts programs in conflict regions, bilingual education, or educational access for U.S. refugees, Rochelle has always enjoyed building relationships with people of all backgrounds and working with diverse communities to help vulnerable children. Rochelle has also published academic research articles in the education field, as well as won literary awards for her short stories, humorous essays, poetry, and short plays. She was inspired to join the Long COVID Families Board in honor of her two young children, including one who has been significantly impacted by Long COVID. Rochelle has a B.F.A. in Theatre Studies from Boston University’s College of Fine Arts (2003) and an M.Ed. in International Education Policy from the Harvard Graduate School of Education (2008). In her spare time, she enjoys spending time with her husband, children, and rescue pup, as well as COVID-safe traveling, reading, volunteering, and hiking/camping.

JD Davids

Board Member

JD Davids is a trangender and queer chronically ill and disabled strategist, storyteller and organizer working with national networks of people living with HIV, Long COVID, ME/CFS and other infection-associated chronic conditions. He was co-founder of Long COVID Justice, and is a member of the Patient-Led Research Collaborative and a patient peer reviewer for the British Medical Journal. He has served as an advisor to NIH, CDC, and state and local health departments. He writes and hosts conversations for the Cranky Queer Guide to Chronic Illness and is a member of the What Would an HIV Doula Do collective. Davids was a longtime member of ACT UP Philadelphia and the founding executive director of CHAMP, a national mobilization force on HIV prevention justice. Currently, he is in the Biography and Memoir program at City University of New York (CUNY) Graduate Center, writing a memoir and conducting research on patient-led social movements, disability justice and sexual liberation.

Newsroom

For media inquiries, multimedia content, to be added to our distribution list or to be directed to a Long Covid Families expert, please contact media@LCFam.org