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About Us

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

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Our Mission

Long Covid Families empowers children and families affected by Long COVID and associated conditions. Our mission is to accelerate pediatric research and ensure safe and appropriate access to education and essential medical care. We advocate for the rights and protections of children experiencing these conditions and their caregivers. Through our work, we support families and ensure a brighter future for everyone navigating these challenges.

Our Vision

We want a future where every child and family impacted by Long COVID receives comprehensive support, compassionate care, and equitable access to resources. Through research, education, and community empowerment, we aim to advance understanding and treatment, ensuring every child can live a healthy, vibrant life free from the challenges of Long COVID.

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 emerged from a pressing need. Our founder, Megan Carmilani, who endured symptoms similar to pediatric Long Covid after a mononucleosis infection during her own childhood, connected with families facing similar challenges early in the pandemic. This relationship sparked the creation of Long Covid Families, addressing the needs of families head-on.

Today, Long Covid Families is driven by a committed team who intimately understand the challenges of long-term COVID
symptoms, whether as patients, caregivers, or both.

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.

Megan Carmilani

Founder, President

With over 20 years of experience in patient advocacy and a background as a former public school teacher, Megan has navigated the challenges of living with poorly understood, infection-associated conditions for over thirty years. Her childhood was marked by missed diagnoses and debilitating symptoms, giving her unique insight into childhood chronic illness. This lived experience guides the advocacy work and mission of Long Covid Families, ensuring that children are included in Long COVID research and have access to education and healthcare. Megan is a voting member of the NIH-funded RECOVER Initiative Pediatric Coordinating Committee, which plans, manages, and monitors the scientific progress of the pediatric study. Additionally, she contributes to the RECOVER National Community Engagement Group, ensuring research addresses the needs of patients, caregivers, and the community.
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.

Elena Rohner

Board Member

Elena Rohner brings 8+ years of experience in management consulting, private equity, and operations roles to the LCF Board. Elena has worked across a broad range of industries, including veterinary medicine, corporate sustainability, infrastructure services, energy, chemicals, and human healthcare. Elena is noted for her passion of triple bottom line value creation, systems-oriented program building, and cross- functional collaboration that empowers teams and drives actionable, resilient solutions for local non-profits to global for-profit organizations. Elena holds a BA and MA in Environmental Studies and Corporate Sustainability from the University of Pennsylvania, where her research focused on environmental health literacy of indoor air quality and the built environment’s influence on human health. Elena developed Long COVID after a COVID-19 infection in December 2020. She is an avid advocate for raising awareness about Long COVID, encouraging and participating in research to develop Long COVID treatments, and supporting the Long COVID patient and caregiver community by increasing access to knowledge and care that improves patient’s quality of life. Elena lives in Westchester County, New York with her husband Tyler.

Charonda L. Johnson

Board Member

Charonda served over seven years in the United States Air Force, specializing in intelligence. She began at Holloman AFB, New Mexico, where she worked with the F-117 stealth fighter and later deployed to Al Udeid Air Base, Qatar, during Operation Iraqi Freedom. Her assignments took her to Yokota AB, Japan, and Balad AB, Iraq, providing crucial intelligence support. After her military career, Charonda became a military and veteran advocate for President Joseph R. Biden Jr. and U.S. Senator Edward E. Kaufman, and later worked with the Delaware National Guard. A mother and JPMorgan Program Manager, Charonda also faced personal loss due to Covid-19, which redirected her focus to advocacy for families affected by the pandemic. She played a key role in establishing Delaware’s first permanent Covid memorial and the passage of the Healthy Delaware Families Act. Today, Charonda continues her advocacy as a grief and loss educator and international speaker.

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
2024 Press Releases

© 2024 Long Covid Families. All rights reserved.
Long Covid Families is a 501(c)(3) nonprofit organization. EIN #87-4017934