Our Work.

Since June 2020 we have:

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• Grown to over 7,100 members in our private, heavily moderated group for Longhaulers, caretakers, medical providers and researchers with representation from 91 countries with nearly 6/7 being from the U.S. Our group, like most other Long COVID groups, is made up of 85% women with the average age being between 25-64, contradicting mainstream messaging that COVID-19 only affects the elderly. 

• Created State Advocacy Teams for all 50 States plus Washington DC, with nearly 500 members registered on a team.

• Created 51 State Chapter groups for every State, including Washington DC. 

• Created Special Populations Chapters such as: Fundraising and Assistance for Longhaulers, Single Parents and Caregivers with Long COVID, BIPOC COVID-19 Longhaulers, Medical Providers and Researchers with Long COVID, Long COVID Pregnancies and Family Planning, Pediatric COVID-19 Longhaulers, Long COVID Teens, Educators with Long COVID, First Responders and Military Personnel with Long COVID

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• Co-Founded the Long COVID Alliance, which helped advocate for the 1.15B Congress awarded the NIH, which includes funding for the RECOVER Initiative. 

• Created the Comprehensive Guide for COVID-19 Longhaulers and Providers

• Created a COVID-Competent Providers list

• Creating a Long COVID Assistance Program (LCAP) 

• Provided language for the Longhaulers Act, the Pandemic Centers of Excellence Bill and the National Coronavirus Commission Act of 2021. We have attended all of the NIH Long COVID listening sessions and assisted with the protocol development of RECOVER. 

• Collaborated with researchers and organizations for recruitment & study design for Long COVID studies across the country and even overseas. 

• Continue to reach out to lawmakers and hold member level meetings surrounding Long COVID, of which many contacts were made from participating in the 2021 Long COVID Advocacy Day in April 2021. We continue to be in contact with lawmakers to bring the data, experiences and needs of their constituents to their attention and push for help at both the state and national levels.