COVID-19 Longhauler Advocacy Project

The COVID-19 Longhauler Advocacy Project's mission is to advance the understanding of Long COVID and expedite solutions and assistance for Longhaulers through advocacy, education research & support. Since our creation in June 2020, we have been instrumental in educating medical providers, researchers, and patients about Long COVID and its associated conditions (LCAC), in addition to highlighting the community's trends, experiences and needs to assist in “filling the gaps” and expediting the work that will lead to solutions. We are constantly reassessing the community to continue to advocate and educate using the most accurate and up to date information and trends that arise out of the Long COVID community via social media, patient-led research and peer-reviewed research.

We are a volunteer organization doing a ton of work, now in need of funds to continue to operate. To date we have collected valuable data used to assess and highlight the trends within the Long Covid community to advocate for the community in high stakes meetings with government officials and agencies, created the "Comprehensive Guide for Longhaulers and Providers" and the "Covid Competent Providers List", Co-founded the Long Covid Alliance, launched 50 states groups + D.C. and 9 special populations groups as chapters, accompanied by "State Advocacy Teams", we provided language for the "Longhaulers Act" and the "Pandemic Centers of Excellence Act", wrote an open-letter to national leadership that highlighted the number of people impacted by Long Covid, and the costs associated with Long Covid to both the Longhauler, the family, the job force, economy and the healthcare system, and we projected what the annual cost would be (these calculations were complimented by two studies released after our estimates were released). This letter allowed us the opportunity to meet with the White House Covid Response Team, HHS, DOL, with others pending in addition to meetings with Senator Kaine's office, for which we provided language for the "CARE for Long Covid Act", with Representative Bush (release tbd), and with Representative Pressley with whom we did a round table with, and partnered in the drafting of the "Treat Long Covid Act." We have put together several PSA's and multiple board members serve on RECOVER Oversight committees. Our website hosts resources we have developed, patient stories, the work we have done and information about our team. We encourage everyone to check it out and utilize the resources available.

We are currently in the process of becoming a 501(c)(3) non profit organization to expand the work we are able to do. We are a non-profit organization based out of Florida, but we are still pending our tax exemption status. We are working to provide more education to the community and providers, but also initiate national public eucation campaigns. We would like to be able to provide relief and assistance to those struggling and help fill the gaps such as inaccessible or non-existent assistance programs. We need basic funds just for oversight alone. We are an organization committed to being around for the long-term and advocating on behalf of Longhaulers and assisting them for as long as need be. We believe in a collaborative community supporting one anothers efforts for the overall benefit of the patient community which simultaneously helps our sister patient communities/ those suffering with conditions associated with Long Covid. We recognize that the majority of the community is facing very hard times and we are urging those facing hardship to not donate to us, but instead, share this request or funding to sustain and improve this active and successful project. We thank everyone in advance for their donations, shares and support. If the project has helped you, please leave us a comment so others can learn about the work we do. 

Organizer and beneficiary

COVID-19 Longhauler Advocacy Project
Boca Raton, FL
Stephanie Gedgaudas

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