Who We Are
Long Covid Families is a patient-led 501c3 nonprofit, that focuses on support for those impacted by Long Covid and triggered illness. Illness is a disrupter to the entire family and can cause a feeling of isolation and disconnection. We work to help those affected reconnect to themselves, their families, and the community.
What We Do
We offer guidance on how to improve and maintain quality of life while seeking therapies, treatments, accommodations, and support in the healthcare system, schools, workplace, and in the community.
We participate in Long Covid research, speak to the media, speak at conferences, host events, and we advocate both in communities and on a national scale. We offer support through our private group and awareness through various social media channels.
Quick Facts – Summer 2022
- Long Covid Families was founded in 2021
- We received our nonprofit status in December 2021.
- Our team is comprised of 15 volunteer advocates from around the United States.
- We have a community reach of ~6,000 and are steadily growing
- Long Covid Families collaborated with Senator Kaine’s office to draft the CARE for Long Covid Act
- Back to School Conference: Four day virtual conference featuring speakers from the Yale Listen Study, the NIH RECOVER Study for Pediatric Long Covid, MEAction, The People’s CDC, Marked By Covid, Project N95, Pandemic Patients, Patient Led Research Collaborative, mental health professionals and community advocates.
Logo & Assets
Our Story Long Covid Families was founded by Megan Carmilani, who developed post-viral syndromes (POTS, MCAS, and ME/CFS) after two separate Mononucleosis diagnosis’ as a child. When the pandemic hit, Megan began to be approached by friends and parents who were seeing the same symptoms and diagnosis that Megan had received. She decided to create Long Covid Families as the community that she needed as a child.
SUPPORT THE CAUSE
Donations are tax deducible and every little bit helps us pay for the essential tools we use for advocacy & awareness. Donate to Long Covid Families.