As 2024 wraps up, we’re looking back at our accomplishments and looking forward to the critical work that we’ll carry into 2025. Highlights from the past year include:
• Publishing Long COVID Essentials, a series of 30+ resource sheets about navigating Long COVID & associated conditions, created in partnership with The Sick Times. Available in English and Spanish.
• Engaging 10,000+ people in organizing against mask bans via strategic cross-movement partnerships with other groups at the forefront of pandemic justice and civil liberties
• Launching an ongoing dialogue with the U.S. CDC to push for patient and advocate-led recommendations to be incorporated into official guidance about masking, treatment, research, and more.
• Launching the HIV Complexities Project, led by and for people living with HIV & complex chronic conditions, in partnership with Citizens’ Public Health Literacy (CIPHER) project at Columbia University, supporting HIV networks, peer navigators, community health workers, providers and advocates to integrate Long COVID & complex chronic illness into their work.
• Finalizing our NYC Needs Assessment + Action Plan, the first city-level patient-led needs assessment for Long COVID in the U.S., in partnership with CUNY School of Public Health and community partners. Our research-based, patient-led Action Plan will launch in 2025.
• Running our narrative change BIPOC Fellowship and Long COVID Communicators program, providing material and capacity-building support to Black, Indigenous, and people of color activists, artists, and researchers who are living with Long COVID and complex chronic illness.
• Expanding the resources on the Long COVID Justice website to include more information on crucial topics like: overlaps of Long COVID with ME/CFS, impacts of Long COVID in trans communities, finding LC-competent providers, applying to Social Security & other disability supports, connecting with local & online organizing and support groups.
• Creating a digital hub for sharing stories from Listening for the Long Haul, our 2 year long oral history project in partnership with the University of Illinois-Chicago featuring 30+ hours of oral histories conducted by trained Narrative Architects living with Long COVID and associated conditions.
• Partnering on campaigns, education, organizing and outreach with Peoples CDC, ACT UP NY, MEAction, Fight for the Future, Mask Together America, Pan End It!, Peoples Hub, Naming the Lost, Body Politic, A Better Balance, and others.
• Giving interviews with outlets including The Sick Times, Disability Visibility, Clear Health Costs, NPR, National Geographic, Washington Post, Wall Street Journal, and Columbia University student radio.