Long Covid” is used to describe post-viral illness that can develop after SARS-CoV-2 infection.


Our Mission

Long Covid Families is a nonprofit organization that focuses on helping caregivers, children, and individuals. Anyone affected by long-term complications from COVID-19, post-viral, or triggered illness is welcome.

We foster a sense of connection: within yourself, your family, and your community.

We share our lived experience and wisdom gained with decision-makers to affect change. Join our support group on Facebook.

What is Long Covid?

Not long into the pandemic, many people reported that they were not recovering as expected. This group of. people is known as “Covid Long Haulers.’

Long Covid in Children

It is challenging to know when your child is struggling to fully recover after Covid-19.

School Accommodations

Children who are struggling with illness can request reasonable accommodations and modifications to help them succeed.

Working with Long Covid

Long Covid can considered a legal disability under the ADA, Section 504, and Section 1557, if it substantially limits one or more major life activities.

Managing Symptoms

Symptoms can fluctuate from day-to-day, week-to-week, and month-to-month. Lifestyle modifications can help improve your daily life.

Contact Us

Long Covid Families looks forward to collaborating with like minded individuals. We would love to hear from you!

Long Covid Families Blog

The Price of Reinfection
My son started sneezing, coughing, and had a runny nose, again… I …
The Protectors: #WhyWeMask
We love a hero story. We watch the movies and read the …
The Lie in Returning to Normal
Privilege as Policy Hurts Everyone Remember when we were doing “we’re in …
#PandemicAbleism
#PandemicAbleism is ableism amplified. It’s going from a whisper to a scream. …
CARE for Long COVID Act
This act will provide Comprehensive Access to Resources and Education (CARE) for …
How to Boil a Frog
Each decline has caught me totally off-guard, and to be honest, I …
Supporting each other

“Connection is the energy that is created between people when they feel seen, heard, and valued–when they can give and receive without judgment.”
– Dr. Brene Brown

Who We Are

We are a community of families affected by post-infectious diseases.

Long Covid Families was founded in 2021 by Megan Carmilani, who developed post-viral syndromes (POTS, MCAS, and ME/CFS) after two separate Mononucleosis diagnoses as a child. When the pandemic hit, Megan was approached by friends who were experiencing symptoms that Megan had for years. She decided to create Long Covid Families – the community that she needed as a child.
 

How We Help

• Peer support and a community built around shared experience. 
• Guidance on accommodations available at schools and in the workplace.

• Resources for caregivers, individuals, and doctors.
• Somatic practices and art workshops to address the trauma of illness and remain connected with our bodies and to our spirit.
• Caregiver/child workshops to foster a connection within families.

Support, Education and Advocacy

Long Covid Families partners with researchers, healthcare professionals, other advocacy groups, and government officials to share our knowledge and experience to affect change.

We are highly motivated to better our community to improving every day lives.

Support is Here

Your routine shifts as your functioning shifts. You learn a new language of medical terms and jargon. You spend hours scouring the internet and social media for insight into why and how and what is happening to you.

It is often there, in those desperate moments of searching, where you find it – your community.

Connect With Us

Join our groups for support.
You can find us on Facebook at Long Covid Families or message us about an upcoming event. If you are an organization that would like to learn more about Long Covid or post-viral syndromes and how to support children and families, please email us at info@longcovidfamilies.org

@LongCovidFam
on Instagram