Top Tweets for #FightForOURFuture

For Our Future The Threat to Public Health Has Never Been Greater. Now More Than Ever, We Need Your Support to Advance Long COVID Education and Resources to Ensure a Better Future for People with Long COVID and Infection-Associated Chronic Conditions. https://t.co/wNLFk6Ouwr The COVID-19 Longhauler Advocacy Project (C19LAP) is a grassroots, patient-led, all-volunteer 501(c)(3) nonprofit with chapters across the U.S., committed to transforming how we understand and respond to Long COVID. Our mission is clear: raise awareness, educate diverse stakeholders, and drive patient-centered care and research to improve life for those affected by Long COVID and other infection-associated chronic conditions (IACCs). Our work spans the development of vital resources, community engagement, and advocacy to push for comprehensive care and research that supports patients and strengthens public health. We Need Your Help Action and resources allocated to Long COVID are few and far between and woefully underfunded. With government funding for public health and research facing an uncertain future, C19LAP’s mission is now more important than ever. We must act to protect our progress, momentum, and the future of science and public health. To do this, we are launching an ambitious $250,000 campaign called “For Our Future”. Our goals for this campaign are twofold: 1) Outreach & Education: Support our participation in major public health, policy, research, education and engagement events. Your support allows us to educate and build relationships with key stakeholders and decision-makers we might not otherwise reach. By attending, we can engage directly with policymakers and healthcare providers, distribute materials and build relationships that encourage cross-sector collaboration on Long COVID and IACCs driving meaningful, informed action. 2) Patient Resources: Support development of essential resources like our Comprehensive Guide to Long COVID, along with webinars, Q&A sessions, and community-driven actions and educational tools that empower patients, caregivers, and stakeholders. Your support will also allow us to bring on critical support staff to protect the last four years of work and progress, and the health of our all-volunteer team of people living with Long COVID. By strengthening our capacity, you’ll enable us to break down the barriers our community faces, adapt to evolving public health challenges, and sustain our mission to advocate for the Long COVID and IACC community. The Challenge We Face and Why Your Support Matters Every donation matters. Your support helps us push back against these rising obstacles, sustain our progress, and ensure that Long COVID and IACC communities are seen, supported, and empowered. Matching gifts and sponsorships amplify our reach even further, enabling us to deliver vital resources and support where it’s needed most. Please stand with C19LAP and the Long COVID community to protect Long COVID initiatives and actions as we fight For Our Future. Donate today to help us create a world where Long COVID receives the recognition, resources, and compassion it deserves. Thank you for joining us in this vital mission. Donations can be made via the following methods: (FEI/EIN #88-1861776) Check: COVID-19 Longhauler Advocacy Project, Inc. P.O. Box 305 7491 N Federal Hwy C5 Boca Raton, FL, 33487 PayPal: https://t.co/zGYzyyHI5p Visit our End-Of-Year Fundraising page and other ways to support our mission here: https://t.co/wNLFk6Ouwr We thank you for your support over the last four and a half years and look forward to continuing to serve the Long COVID community. Our Success in 2024 The 2024 Comprehensive Guide to Long COVID (V2): This month, we proudly launched an in-depth 500+ page resource covering prevention, testing, treatment, and documentation essentials. The guide provides insights on Long COVID’s causes, symptoms, associated conditions, and relevant specialists, while offering practical tools for self-advocacy, navigating healthcare, accessing accommodations, and combatting discrimination. Our aim is to empower patients and strengthen communities, providing a roadmap for those seeking support, ways to get involved, and resources for living with chronic illness. The American Public Health Association (APHA) Annual Meeting: In October, C19LAP made a strong impact at the American Public Health Association (APHA) Annual Meeting. Our team of dedicated patient and caregiver volunteers educated public health professionals, distributed informational materials and N95 masks, and heard many personal stories from others affected by Long COVID. Our founder, Karyn Bishof, joined infectious disease expert Dr. Michael Osterholm in a conversation titled Infectious Disease Mitigation: A 21st Century Challenge, focusing on the need for collaboration, transparency, and proactive engagement to restore trust in public health and prepare for future pandemics. This session, covered in the APHA newsletter, highlights our commitment to building partnerships and advancing a more resilient public health framework. The Infection-Associated Chronic Conditions Initiative: The global COVID-19 pandemic has created unprecedented awareness of the long-term health implications of an infection, with tens of millions of people in the U.S. battling Long COVID.Over the last year, C19LAP has chaired the CDC ICUE project for the Long COVID Alliance that brought together over 50 various Infection-Associated Chronic Conditions organizations, as well as researchers and clinicians to identify common research, clinical care, and education needs. While funding for this project through the CDC has ended, we launched in October to continue our work and momentum bringing attention to this field. The 2024 NASEM Long COVID Definition: C19LAP founder and president, Karyn Bishof, served on the National Academies of Science, Engineering, and Medicine Committee tasked with developing a consensus definition for Long COVID. Our founder was nominated to this committee by the community, and helped ensure the patient voice and experience was centered in the committee's work. The 2024 NASEM Long COVID definition was released this June and warmly welcomed by the patient community, as well as by clinicians and researchers, and in October, Admiral Levine wrote a letter to NASEM stating the definition would be used across the whole of government for general purposes. Having this definition helps improve surveillance, clinical care guidelines, research priorities, policy, and funding allocations. C19LAP Coalitions and Memberships: - Cofounder, Long COVID Alliance - Member, Disability Economic Justice Collaborative - Member, American Public Health Association C19LAP Leadership Engagements: - AHRQ Long COVID Care Network - NIH RECOVER Committees - Regular meetings with government officials and health agencies. - Vermont Center for Independent Living Long COVID Peer Support program