Our Work.

Advocacy

Co-drafted the TREAT Long COVID Act in the House w/ Rep. Pressley (Senate version introduced by Sen. Duckworth).
Co-drafted a $60 million appropriations request in the House with Rep. Bush ($125M Senate version introduced by Sen. Markey) to assist the HHS in tracking and treating Long COVID.
Provided various legislative language for the National Coronavirus Commission Act of 2021, the Pandemic Centers of Excellence Act, The Longhaulers Act, Minnesota's Budget, and the CARE for Long COVID act.
Published a groundbreaking report and open letter to national leadership calling for the immediate formation of a Long COVID Assistance Program and a Long COVID Task Force in addition to urging POTUS to discuss Long COVID during the State of the Union Address. Wrote a response to the open-letter and a response to the SOTU address and submitted a Letter For the Record to the Select Subcommitted on the Coronavirus Crisis Hearing on July 19, 2022.
Submitted recommendations to the DOL Long COVID Dialogue July, 2022.
Continued meetings with the NIH, White House COVID Response Team and various divisions of HHS, including the DOL.
Co-founded the Long COVID Alliance, and became members of the Disability Economic Justice Collaborative and National Network for Long COVID Justice.

Education

Created the Comprehensive Guide for Longhaulers and Providers.
Created the largest list of Post COVID Care Centers to date (8-2022)
Created the COVID Competent Providers List.
Created the Roadmap to Successful Long COVID End Points
Webinar discussion the Biden-Harris Administations reports on Long COVID, existing Long COVID Legislation & the importance of community engagement.
Created one of the first Long COVID PSA's, October 2020.
Created a Long COVID Pediatric PSA, February 2022.
Spoke at and lead meetings with lawmakers for 2 years during Long COVID/ Post-Viral Illness advocacy week.
Participated in a Congressional Roundtable Meeting with Representative Pressley.
Attended Various Media Appearances and speaking events.
Consistent member interaction and engagement within our support groups via sharing studies, public health guidance, research findings, announcements, enrollments and answering community questions and concerns.

Research

The First Confirmed Case Only, Longhauler Survey- 1,700, June 2020
Confirmed and Unconfirmed Longhauler Survey- 700, July 2020
Experiences and Needs of Longhaulers Survey- 1,200, Oct 2020
Florida Specific Longhaul Survey for congressional request- 100,
April 2021
Several long-time members (including our founder) are serving on committees and task forces within the NIH's RECOVER Initiative.
Our founder serves on the Long COVID Research Fund's Advisory Board.
Continued community polls via social media measuring the experiences and impacts to the Long COVID community, their families, the economy, and the medical system.
JAMA: The Costs of Long COVID by Dr. David Cutler

Support

Created our Facebook Group in June 2020.
Created our Youtube Channel in October 2020.
Created our Facebook Page in January 2021.
Created our State and Special Populations Chapter Groups on Facebook in January 2021.
Created our Twitter in February 2021.
Created our TikTok in January 2022.
Created our Instagram in June 2022.
Provided the advocacy, education and research initiatives above.
Provide numerous resources to the community as they become available and as we create them.
Our Founder & President was awarded the Amerila Moore Sparkle Award for Compassionate Advocacy by Dysautonomia International in July 2022.

Our Future Goals

Provide financial assistance to the Long COVID community & families.
Create national public education and awareness campaigns and programs.
Create and facilitate a national provider education program and partnerships.
Partner with patient advocates, liaisons, advisors, case managers and others who can help assist patients through their medical journey, and help search for and obtain local resources and benefits.

Goals will evolve over time and

with funding availability.

Our Work.

Advocacy

Co-drafted the TREAT Long COVID Act in the House w/ Rep. Pressley (Senate version introduced by Sen. Duckworth).

Co-drafted a $60 million appropriations request in the House with Rep. Bush ($125M Senate version introduced by Sen. Markey) to assist the HHS in tracking and treating Long COVID.

Provided various legislative language for the National Coronavirus Commission Act of 2021, the Pandemic Centers of Excellence Act, The Longhaulers Act, Minnesota's Budget, and the CARE for Long COVID act.

Submitted recommendations to the DOL Long COVID Dialogue July, 2022.

Continued meetings with the NIH, White House COVID Response Team and various divisions of HHS, including the DOL.

Co-founded the Long COVID Alliance, and became members of the Disability Economic Justice Collaborative and National Network for Long COVID Justice.

Education

Created the Comprehensive Guide for Longhaulers and Providers.

Created the largest list of Post COVID Care Centers to date (8-2022)

Created the COVID Competent Providers List.

Created the Roadmap to Successful Long COVID End Points

Webinar discussion the Biden-Harris Administations reports on Long COVID, existing Long COVID Legislation & the importance of community engagement.

Created one of the first Long COVID PSA's, October 2020.

Created a Long COVID Pediatric PSA, February 2022.

Spoke at and lead meetings with lawmakers for 2 years during Long COVID/ Post-Viral Illness advocacy week.

Participated in a Congressional Roundtable Meeting with Representative Pressley.

Attended Various Media Appearances and speaking events.

Consistent member interaction and engagement within our support groups via sharing studies, public health guidance, research findings, announcements, enrollments and answering community questions and concerns.

Research

The First Confirmed Case Only, Longhauler Survey- 1,700, June 2020

Confirmed and Unconfirmed Longhauler Survey- 700, July 2020

Experiences and Needs of Longhaulers Survey- 1,200, Oct 2020

Florida Specific Longhaul Survey for congressional request- 100, April 2021

Several long-time members (including our founder) are serving on committees and task forces within the NIH's RECOVER Initiative.

Our founder serves on the Long COVID Research Fund's Advisory Board.

Continued community polls via social media measuring the experiences and impacts to the Long COVID community, their families, the economy, and the medical system.

JAMA: The Costs of Long COVID by Dr. David Cutler

Support

Created our Facebook Group in June 2020.

Created our Youtube Channel in October 2020.

Created our Facebook Page in January 2021.

Created our State and Special Populations Chapter Groups on Facebook in January 2021.

Created our Twitter in February 2021.

Created our TikTok in January 2022.

Created our Instagram in June 2022.

Provided the advocacy, education and research initiatives above.

Provide numerous resources to the community as they become available and as we create them.

Our Founder & President was awarded the Amerila Moore Sparkle Award for Compassionate Advocacy by Dysautonomia International in July 2022.

Our Future Goals

Provide financial assistance to the Long COVID community & families.

Create national public education and awareness campaigns and programs.

Create and facilitate a national provider education program and partnerships.

Partner with patient advocates, liaisons, advisors, case managers and others who can help assist patients through their medical journey, and help search for and obtain local resources and benefits.

Subscribe & Stay Connected!

Florida Specific Longhaul Survey for congressional request- 100,
April 2021