Spaces Event on International Long COVID Awareness Day 2025

Part 1: Opening Reflections and Long COVID’s Emotional Toll
Part 2: Advocacy Roots and Masking Impact
Part 3: Celebrity Advocacy and Long Covid Prevalence
Part 4: Community Strategies and Inclusivity
Part 5: Exercise, Brain Damage, and Viral Persistence
Part 6: Clinical Challenges and Societal Impact
Part 7: Testing Advances and Coping Strategies
Part 8: Clinician Guides and Patient Advocacy
Guest Speakers
About Long COVID Awareness Day

Welcome to the International Long COVID Awareness Day Space, a historic 12-hour live podcast held on March 15, 2025, hosted by Becky and Jelly (Joe) under the International Long COVID Awareness group (ILCA). This marathon event brought together patients, scientists, clinicians, and advocates—including luminaries like Dr. Elisa Perego, Morgan Fairchild, and Dr. David Putrino—to spotlight the ongoing crisis of Long COVID. From personal stories of loss and resilience to cutting-edge research on viral persistence and sleep, the day blended raw emotion with actionable science. Below, explore eight clips and summaries, making it easy to dive into the moments that matter most to you—from advocacy origins to future strategies—capturing a global fight for recognition and hope.

Part 1: Opening Reflections and Long COVID’s Emotional Toll

Summary: The International Long COVID Awareness Day Space begins with hosts Becky A.Robertson @ancirabecky and Dr. Joe (Jelly) Eastman welcoming listeners to a 12-hour global event on March 15, 2025, organized by ILCA. Angela, ILCA’s leader, opens with a heartfelt reflection on five years of loss—lives, jobs, and hope—leading a moment of silence to honor the community’s grief. Therapist Olivia Belkman shares her journey into COVID-conscious therapy after her own infection, offering resources like “What Therapists Need to Know About COVID-19” and insights on mental health challenges, including suicidal ideation and grieving lost selves. The segment ends with Deb Holloway introducing LongCovidLand.com, a patient-story archive, amid calls for better definitions and government action.

Timestamps:

00:00:00: Becky opens, awaiting Jelly, testing audio.
00:00:41: Jelly joins, welcomes listeners, credits ILCA’s global coordination.
00:01:08: Becky introduces ILCA, mentions profile frame link and upcoming speakers (e.g., Dr. Perego).
00:04:50: Angela joins, thanks organizers, offers opening remarks.
00:09:41: Angela reflects on five years of loss, leads into moment of silence.
00:13:17: Moment of silence begins, honoring lost lives and hope.
00:19:08: Olivia Belknap starts, shares her COVID infection and therapy journey.
00:23:32: Olivia introduces “What Therapists Need to Know About COVID-19” resource.
00:34:55: Olivia discusses suicidal ideation post-COVID, offers support strategies.
00:38:06: Olivia addresses grieving lost selves, suggests self-compassion.
01:05:56: Deb introduces LongCovidLand.com, a patient-story preservation project.
01:27:15: Julie critiques narrow Long COVID definitions, calls for broader recognition.
01:32:44: Angela echoes Julie, suggests a future town hall to refine definitions.

Part 2: Advocacy Roots and Masking Impact

Summary: Part 2 bridges emotional reflection with actionable science as Becky and Jelly discuss advocacy origins and practical solutions. Jelly shares his motivation, sparked by a cancer diagnosis and 30 years of anticipating a global airborne virus, leading to his predictive COVID models from 2020. The segment highlights LongCovidLand.com’s patient-story book and previews a Sunday brunch support group. Jelly ties in Mask Together America’s prevention focus, presenting his masking studies showing a 70% infection drop with 25% N95 use, urging renewed masking efforts. Dr. Elisa Perego’s arrival caps the hour, recounting how she coined “Long COVID” in 2020 amid personal illness, igniting a global patient-led movement.

Timestamps:

00:00:00: Becky notes upcoming speakers (Dr. Jaffe, Dr. Ewing) will address Long COVID definitions tonight.
00:01:01: Becky celebrates global landmarks lighting up for Long COVID Awareness, asks Jelly’s advocacy origin.
00:02:19: Jelly reveals his 30-year virus prediction, spurred by retirement and Wuhan reports.
00:04:11: Jelly describes his 2020 model predicting 300,000 daily infections, cancer diagnosis fueling his drive.
00:06:05: Jelly connects his cancer hope to Long COVID despair, vows to humanize the science.
00:09:13: Becky introduces LongCovidLand.com’s book, a patient resource compilation.
00:10:52: Becky promotes Sunday Long COVID Brunch, invites community support.
00:12:20: Becky anticipates scientists’ evening collaboration, offering hope via real-time science.
00:17:28: Becky introduces Dr. Perego, credits her for naming Long COVID and sparking advocacy.
00:19:29: Dr. Perego begins, thanks community, shares her Lombardy 2020 infection story.
00:25:42: Dr. Perego details May 2020 relapse, linking it to micro-clots and viral persistence.
00:30:41: Dr. Perego explains “Long COVID” coinage, tied to prolonged multi-system disease.
00:42:52: Dr. Perego celebrates community naming Long COVID, a historic patient-led act.
01:00:35: Dr. Perego offers hope in research volume, critiques treatment access gaps.
01:16:06: Jelly presents masking study, 25% N95 use cuts infections from 140M to 25M over 4 months.

Part 3: Celebrity Advocacy and Long Covid Prevalence

Summary: Part 3 opens with anticipation for Morgan Fairchild, delayed by traffic, as Becky and Jelly bridge with stats (400M global Long COVID cases) and Jelly’s global pathogen forecast system. Morgan arrives at 00:31:16, sharing her virology passion, AIDS activism, and personal losses to Long COVID, including her fiancé’s death, urging persistent advocacy. Dr. Anthony Leonardi joins at 00:47:42, estimating 70-90% prevalence of COVID sequelae, critiquing science’s politicization, and exploring monoclonal antibodies and T-cell challenges, ending with cautious optimism amid systemic hurdles.

Timestamps:

00:00:00: Becky awaits Morgan Fairchild, stuck in traffic, teases her advocacy significance.
00:02:52: Becky requests global Long COVID photos, previews Morgan’s allyship.
00:05:32: Jelly offers to play a Matt McNeil interview with Dr. Jaffe, shares forecast plans.
00:09:08: Jelly details a global pathogen forecast system (COVID, measles, H5N1) for public health.
00:11:36: Becky cites 400M Long COVID cases, 31% higher risk for women, NIH funding retained.
00:15:56: Jelly lists top Long COVID symptoms (fatigue 36%, memory decline 28%), previews sleep focus.
00:19:01: Becky praises Dara’s CDC event, tackles tech issues with blocked users.
00:26:28: Martha reflects on allies’ role, inspired by brain damage reports in 2020.
00:31:16: Morgan Fairchild arrives, shares virology roots and AIDS work.
00:34:01: Morgan recounts fiancé’s Long COVID death, friends’ struggles, commits to advocacy.
00:39:20: Morgan compares AIDS and COVID immune impacts, notes Hollywood’s silence.
00:43:34: Morgan addresses actors’ fear of uninsurability due to Long COVID symptoms.
00:47:42: Dr. Anthony Leonardi starts, critiques self-defeating COVID policies.
01:00:19: Dr. Leonardi doubts T-cell vaccines, favors antibodies and CRISPR-Cas for reservoirs.
01:45:20: Dr. Leonardi estimates 70-90% COVID sequelae prevalence, including subtle damage.

Part 4: Community Strategies and Inclusivity

Summary: Part 4 dives into grassroots solutions as Becky and Jelly navigate tech hiccups. Prof. Yaneer Bar-Yam proposes a Long COVID physician specialty and research framework, detailing World Health Network’s five pillars—science, communication, community action, platforms, and education—emphasizing bottom-up collaboration over government reliance. Chimere Sweeney joins afterwards, urging inclusivity for marginalized groups, especially Black men, and support for Long COVID businesses, reflecting on five years of advocacy.

Timestamps:

00:00:00: Becky and Jelly recap the day’s diversity, await Prof. Yaneer Bar-Yam amid tech glitches.
00:03:30: Prof. Yaneer Bar-Yam introduces physician standards and Long COVID specialty idea.
00:06:00: Prof. Yaneer Bar-Yam credits Lisa for a framework to certify Long COVID expertise.
00:12:18: Prof. Yaneer Bar-Yam shifts to research barriers, advocates a community-driven framework.
00:26:04: Becky asks about government reengagement; Prof. Yaneer Bar-Yam favors working around it.
00:32:04: Jelly praises bottom-up approach, seeks ways to contribute as a community.
00:39:25: Prof. Yaneer Bar-Yam outlines WHN’s science efforts, shifting to actionable public info.
00:42:47: Prof. Yaneer Bar-Yam highlights community action, like Right to Mask bills in states.
00:44:23: Prof. Yaneer Bar-Yam discusses platforms (Slack, Discord, Covid Meetups) for collaboration.
00:47:10: Prof. Yaneer Bar-Yam introduces WHN’s education group, focusing on citizen science.
00:59:22: Chimere starts, thanks ILCA, commemorates losses, seeks film funding.
01:04:05: Chimere calls for inclusivity, shifting advocacy to unite marginalized groups.
01:08:03: Chimere regrets not inviting more Black men, sets 2026 goal to engage them.
01:12:57: Chimere urges support for Long COVID businesses born from necessity.

Part 5: Exercise, Brain Damage, and Viral Persistence

Summary: Part 5 begins with Dr. Sean Mullen overcoming tech issues, sharing his exercise psychology insights and advocacy wins like school air purifiers and CO2 monitors, linking Long COVID to mobility and cognitive decline. Dr. Danielle Beckman joins, detailing her shift from Alzheimer’s to COVID brain research after finding SARS-CoV-2 in monkey brains, highlighting viral persistence and neuroinflammation. Dr. Rae Duncan briefly connects heart and brain impacts, emphasizing interdisciplinary collaboration. The segment ends with Dr. Beckman’s move to Europe for peptide research and Dr. Alice noting neurosurgeons’ observations of post-COVID complications.

Timestamps:

00:00:00: Becky introduces Dr. Sean Mullen, praising his advocacy despite a tornado near-miss.
00:04:41: Dr. Sean connects, shares his non-COVID status and exercise psychology focus.
00:07:50: Dr. Sean ties Long COVID to cognition and mobility, credits community advocacy.
00:11:21: Dr. Sean details air purifier wins in schools, shocked by unused stock.
00:41:25: Dr. Sean links repeat infections to athlete injuries and mobility issues.
00:49:21: Dr. Sean suggests light resistance training to counter muscle loss cautiously.
00:52:10: Dr. Sean shares CO2 monitor donation and Illinois clean air bill progress.
01:11:56: Dr. Danielle Beckman starts, thanks hosts, shares her COVID research origin.
01:15:49: Dr. Beckman explains her primate Alzheimer’s work shifting to COVID in 2020.
01:20:23: Dr. Beckman finds SARS-CoV-2 in monkey brains, sparking her advocacy.
01:25:02: Dr. Beckman contrasts COVID’s rapid brain inflammation with Alzheimer’s slow decline.
01:29:24: Dr. Beckman details viral entry via olfactory and vascular routes.
01:35:20: Dr. Beckman warns of personality changes and risks to developing brains.
01:39:06: Dr. Beckman announces her move to Europe for peptide-based viral clearance research.
01:52:37: Dr. Alice notes neurosurgeons seeing post-COVID surgery complications and TBI-like symptoms.

Part 6: Clinical Challenges and Societal Impact

Summary: Part 6 features Dr. Rae Duncan probing Dr. Danielle Beckman on viral persistence and treatment challenges, highlighting the complexity of distinguishing live virus from remnants and the blood-brain barrier’s role. Dr. Alice joins, noting neurosurgeons’ concerns about post-COVID surgical complications and the lack of COVID-inclusive risk scores. MJNabuurs @EmJayNabuurs raises cognitive decline in decision-makers, sparking a discussion with Becky on documenting commitments and societal unpreparedness for widespread brain fog, ending with technical glitches as new speakers prepare.

Timestamps:

00:00:00: Becky invites Dr. Rae to speak, noting her clinician-scientist dual role.
00:00:54: Dr. Rae, a cardiologist, asks Dr. Beckman about treating persistent virus vs. remnants.
00:03:36: Dr. Rae links endothelial damage to brain and organ issues, seeks viral entry insights.
00:07:43: Dr. Beckman confirms macrophages and neutrophils carry virus into the brain.
00:10:30: Dr. Beckman notes blood-brain barrier limits therapy, calls for research funding.
00:13:23: Dr. Rae stresses prevention alongside treatment to break reinfection cycles.
00:20:42: Dr. Rae praises Dr. Beckman’s Long COVID kids research, urges a global taskforce.
00:27:40: Becky seeks ways to discern viral replication vs. remnants for treatment.
00:38:09: Dr. Alice highlights neurosurgeons’ COVID-related surgery complication concerns.
00:44:29: Dr. Alice shares her severe COVID brain injury, treated at a TBI clinic.
00:50:03: MJ questions decision-makers’ cognitive decline, suggests documenting commitments.
01:09:47: Becky details her family’s ADHD-like struggles, needing constant reminders.
01:15:30: MJ proposes an “overwhelm coordinator” to aid Long COVID patients.
01:17:57: Dr. Beckman cites canceled DoD grant on leadership cognitive decline.
01:27:41: Dr. Alice doubts current cognitive tests’ sensitivity for subtle deficits.

Part 7: Testing Advances and Coping Strategies

Summary: Part 7 opens with Josh discussing transcriptomic testing for detecting active SARS-CoV-2 replication via antisense RNA, advocating for its use in Long COVID trials. Dr. Michael Hoerger joins, sharing his clinical psychology background and forecasting a grim trajectory of 40% Long COVID prevalence by 2030 without mitigation breakthroughs. He offers coping strategies, blending primary control (mitigation) and secondary control (emotional resilience) tactics like DIY fit testing and nostalgia. Steve and Lisa praise these ideas, while Dr. Katie and MJ highlight practical applications, ending with anticipation for Dr. David Joffe and Prof. Andrew Ewing.

Timestamps:

00:00:00: Becky welcomes Josh after 9.5 hours, celebrating Long COVID Awareness Day.
00:01:05: Josh explains transcriptomic testing for antisense RNA, indicating active viral replication.
00:03:34: Josh cites Dr. Johan Van den Berg’s work, pushing for RNA viral load as a biomarker.
00:05:08: Josh references the El Cap book, urging multi-omics testing for Long COVID.
00:09:06: Dr. Mike Hoerger joins, outlines his psychology and COVID dashboard expertise.
00:13:14: Dr. Mike forecasts 8 infections per person by 2030, ~40% Long COVID prevalence.
00:19:16: Dr. Mike critiques poor COVID death counts, expects 100,000 annual excess deaths.
00:25:39: Becky seeks hope; Dr. Mike sees optimism in shifting attitudes and small wins.
00:39:32: Dr. Mike advises primary control (mitigation) and secondary control (emotional) coping.
00:52:42: Dr. Mike details DIY fit testing with Bittrex for mask efficacy.
01:08:17: Liza shares sunrise plans, credits Dr. Mike’s coping tips for a positive start.
01:09:38: Steve T. supports fit testing, notes taste/smell challenges for Long COVID patients.
01:17:59: Dr. Mike suggests sweet vs. bitter solutions for taste-impaired fit testing.
01:21:09: Dr. Katie finds nostalgia (photo albums) lifts mood, easing Long COVID struggles.
01:31:11: Dr. Mike previews forecast model upgrades and excess death estimates.

Part 8: Clinician Guides and Patient Advocacy

Summary: Part 8 features Dr. David Joffe and Dr. Andrew Ewing concluding Long COVID Awareness Day with a focus on the World Health Network’s efforts. Dr. Joffe discusses sleep’s critical role in Long COVID recovery, while Dr. Ewing outlines the Physicians Quick Guide and a comprehensive handbook to educate clinicians globally. Simon from Long COVID Switzerland advocates for patient-led pressure, drawing parallels to HIV activism, and Veronica highlights ME/CFS parallels. Becky and Joe wrap up, celebrating over 12 hours of impactful discussion and resilience.

Timestamps:

00:00:07: Dr. Joffe joins from Sydney (36°C), humorously opts for water over malt.
00:04:28: Dr. Ewing joins from Sweden (0°C), teams up with Dr. Joffe for WHN updates.
00:07:18: Dr. Joffe stresses bridging bench science and patient needs via WHN projects.
00:11:51: Dr. Ewing details the Physicians Quick Guide and full handbook for clinicians.
00:20:22: Dr. Ewing sees a geopolitical window to push Long COVID despite funding woes.
00:29:39: Dr. Ewing suggests reframing Long COVID as a chronic issue for political traction.
00:42:00: Simon (Long COVID Switzerland) urges patient-led protests to pressure politicians.
00:49:26: Dr. Joffe seeks HIV activism lessons for Long COVID, laments societal denial.
00:54:49: Veronica asks about ME/CFS inclusion; Drs. confirm its relevance to WHN.
01:01:20: Dr. Joffe explains sleep’s role in Long COVID, urging sleep studies.
01:08:05: Dr. Ewing reinforces persistence and education as key to progress.
01:10:13: Joe praises the day’s speakers, especially Drs. Joffe and Ewing’s finale.
01:13:23: Becky offers t-shirts to 12-hour listeners, thrilled by the day’s impact.
01:14:05: Joe thanks Angela, credits Becky’s inspiration, ending on a hopeful note.
01:14:56: Becky plans to unwind, buoyed by the cavalry’s arrival.

Guests Speakers

12 hour Marathon Space w/Guest Speakers from the LC Community, LC Advocates, Board Members of The WHN, Doctors & Scientists

Dr. Elisa Perego, Doctor & Founder of the term “Long Covid”

Dr. Elisa Perego is an Italian researcher and a prominent Long COVID advocate, best known for coining the term “Long COVID” in May 2020. She is currently an Honorary Research Associate at the Institute of Archaeology, University College London (UCL). Her academic background is interdisciplinary, with a PhD in archaeology from UCL, where her work historically focused on social marginality, inequality, and social change in the late prehistoric and early Roman central Mediterranean. She also held a Marie Skłodowska-Curie Fellowship from the European Commission (2017–2019) at the Austrian Academy of Sciences, reflecting her extensive recognition in academia.

Since 2020, Dr. Perego’s research has shifted toward health, disability, and inequality, particularly in relation to Long COVID and COVID-19. Her personal experience with Long COVID, which she developed during the first wave of the pandemic in Lombardy, Italy, inspired her advocacy. She introduced the term “Long COVID” via a hashtag on May 20, 2020, to describe persistent symptoms following COVID-19 infection, a concept that gained global traction. She has since authored some of the earliest publications on Long COVID and its advocacy movement, contributing to its recognition by the World Health Organization (WHO) during a landmark meeting on August 21, 2020. Her work bridges patient-led research, science communication, and policy, emphasizing the importance of patient voices in medical science.

Dr. Perego’s broader research interests include human-gene-environment interactions, climate change, and societal responses to crises in ancient contexts. She has also worked as a teacher and educator, holding qualifications in this field. Living with Long COVID and other chronic illnesses since childhood, she brings a unique perspective to her work.

ILCA, International Long Covid Awareness org.

At ILCA, we believe that behind every symptom is a story, and behind every story is a human being deserving of understanding, care, and hope.

International Long COVID Awareness Day, observed annually on March 15, was established in 2023 by the International Long Covid Awareness (ILCA) and the Long Covid Action Project (LCAP). This initiative emerged from the collective efforts of patients, caregivers, and advocates aiming to increase visibility, prevent COVID infections, empower patients, share support and resources, educate about Long COVID symptoms, and highlight the need for funding relevant research.

The movement was significantly propelled by the online sharing of personal experiences. Early in the pandemic, individuals with persistent symptoms began documenting their experiences on platforms like Twitter, using hashtags such as #LongCovid. This grassroots sharing challenged official narratives and brought attention to the condition, leading to the formation of support networks and advocacy groups.

Communities united through various organizations and initiatives. The Long COVID Alliance, comprising patient-advocates, scientists, and healthcare professionals, works to educate policymakers and accelerate research. Support groups and mental health resources have been established to provide safe spaces for individuals to share experiences and access information. Additionally, organizations like Long Covid Families offer resources and support for those affected.

International Long COVID Awareness Day serves as a rallying point for these communities, fostering solidarity and advocating for recognition, research, and resources to address the ongoing challenges posed by Long COVID.

Founded from the lived experiences of those facing the lasting impacts of Covid-19, ILCA is a global beacon of support, advocacy, and education. We exist to raise awareness of Long Covid, amplify the voices of those affected, and champion the urgent need for research, resources, and recognition.

Our community spans continents but shares one heart—bound by resilience, empathy, and the unwavering belief that healing begins when we come together.

Whether you’re a patient, a loved one, a clinician, or a supporter: you are not alone. ILCA is here to walk with you, speak with you, and stand with you.

Because every breath matters. Every voice counts. And every life deserves dignity.

Yaneer Bar-Yam, NECSI & The World Health Network

Yaneer Bar-Yam is an American physicist, systems scientist, and complexity researcher. He is the founding president of the New England Complex Systems Institute (NECSI) and has contributed to the study of complex systems in various fields, including economics, healthcare, and pandemic response.

Bar-Yam earned his Ph.D. in physics from the Massachusetts Institute of Technology (MIT) and has authored influential works, including Dynamics of Complex Systems and Making Things Work. His research applies mathematical modeling and complexity science to real-world challenges such as financial crises, ethnic conflicts, and infectious disease outbreaks.

During the COVID-19 pandemic, Bar-Yam was an advocate for early containment strategies and co-founded the World Health Network (WHN) to support global public health responses. His interdisciplinary work continues to inform policies on resilience, network dynamics, and systemic risks in modern societies.

Dr. David Joffe

Dr. David Joffe is an Australian respiratory and sleep medicine physician based in St Leonards, New South Wales. He holds a Bachelor of Medicine and Bachelor of Surgery with Honours (MB BS Hons), a Doctor of Philosophy (PhD), and is a Fellow of the Royal Australasian College of Physicians (FRACP).

Dr. Joffe specializes in sleep medicine, focusing on conditions such as obstructive sleep apnea (OSA), restless legs syndrome, insomnia, narcolepsy, and sleep-related behavioral disorders. In the field of respiratory medicine, he has particular expertise in neuromuscular-related respiratory diseases, respiratory failure, and complications arising from spinal injuries. He serves as the coordinator of the Respiratory Special Care Unit (ReSCU) at Royal North Shore Hospital.

In addition to his clinical roles, Dr. Joffe is actively involved in research, with interests in sleep debt and performance, the neurocognitive implications of sleep apnea, and the relationship between neuromuscular diseases and sleep-disordered breathing. He has also explored the sleep complications associated with post-traumatic stress disorder (PTSD) and neurodegenerative disorders like Parkinson’s disease.

Dr. Joffe contributes to the medical community as a Visiting Medical Officer and is involved with the Intelligence Group Respiratory at the Agency for Clinical Innovation (ACI). He also serves as an advisor to the World Health Network (WHN) for Long COVID and is the Vice Chair of the WHN Long COVID Working Group.

Dr Michael Hoerger, Professor of Psychology, Psychiatrist, & Oncologist

Dr. Michael Hoerger is an Associate Professor of Psychology, Psychiatry, and Oncology at Tulane University in New Orleans, Louisiana. He is a clinical health psychologist and decision scientist widely recognized as a leading expert in psycho-oncology research. Dr. Hoerger earned his B.S. in psychology from Michigan State University in 2005, followed by a Ph.D. in clinical psychology from Central Michigan University in 2010. He completed an American Psychological Association-accredited internship at the University of Rochester Medical Center (URMC) in 2010 and an NIH National Research Service Award fellowship in Healthcare Decision Making at URMC in 2013. That same year, he joined Tulane University.

His research focuses on improving quality of life for adults with cancer by applying translational psychological science, particularly in areas like personality, emotion, and decision-making. Dr. Hoerger is the founding Director of Tulane’s Psycho-Oncology Research Program and Louisiana’s first Health Psychology doctoral training program. He has published over 80 scientific papers, serves on editorial boards such as Health Psychology, and reviews grants for organizations like the Patient-Centered Outcomes Research Institute (PCORI). Additionally, he is known for his work in palliative care research and pandemic mitigation, leveraging his expertise to address both emotional and physical burdens of serious illnesses.

Dr. Rae Duncan, Cardiologist

Dr. Rae Duncan, a prominent Consultant Cardiologist known for her work in cardiovascular medicine and Long Covid research, who uses the handle @sunny-rae1 on social media.

Dr. Rae Duncan is a Senior Consultant Cardiologist at Newcastle Hospitals NHS Foundation Trust in the United Kingdom and an Honorary Senior Lecturer at the University of Newcastle. She holds an MBChB, a BSc (Hons) in Virology/Immunology/Bacteriology, and postgraduate degrees (MSc and MD) in cardiovascular research. With over 20 years in cardiology, she is accredited in advanced echocardiography and cardiovascular magnetic resonance imaging (SCMR Level 3). During the COVID-19 pandemic, she shifted focus to treat acute COVID patients and later established a Long Covid cardiovascular complications clinic. A mother of four, she has personal experience with COVID infections, fueling her advocacy for better Long Covid treatments.

Dr. Duncan is a member of the Long Covid International Research Collaboration (TeamClots), has authored treatment trials, and secured a £2 million grant from Kanro for pediatric Long Covid research. She has received accolades like a Clinical Excellence Award and was a Unite Health International COVID-19 award finalist. Beyond clinical work, she educates globally on cardiology and Long Covid, contributing to WHO briefings and UK parliamentary discussions. Her work reflects a blend of clinical expertise, research, and public health advocacy.

Olivia Belknap, Covid cautious and LC Therapist

Olivia Belknap is an Associate Marriage and Family Therapist (AMFT #145716) based in California, working under the supervision of Lisa Gray, LMFT (#44983), as she accrues hours toward full licensure. She earned her Bachelor’s degree in Psychological and Brain Sciences from the University of California, Santa Barbara, in 2021, and her Master’s in Marriage and Family Therapy from California State University, Northridge, in 2023. Specializing in neurodiversity-affirming practice, she primarily serves clients who are neurodivergent (e.g., Autistic, ADHD, OCD), COVID-conscious, LGBTQ+, or living with chronic illness. Belknap offers 100% virtual therapy services—individual, couples, and family therapy—as well as adult Autism assessments to clients across California. She is passionate about supporting clients through pandemic-related stress and understanding neurodivergence, identifying as a COVID-conscious therapist and advocate. Her approach integrates narrative therapy, mindfulness-based CBT, and a strengths-based perspective, informed by her own lived experiences in these areas. oliviabelknaptherapy.com

The majority of my clients are neurodivergent (Autistic, ADHD, OCD, etc), highly sensitive (HSPs), COVID-conscious, LGBTQ+, living with chronic illness, or a combination of these.

Morgan Fairchild, Actress

Morgan Fairchild is an American actress, born Patsy Ann McClenny on February 3, 1950, in Dallas, Texas. Renowned for her striking beauty and versatile performances, she became a prominent figure in television and film during the 1970s and 1980s, often portraying glamorous, sophisticated, and sometimes villainous characters. Her career spans over five decades, marked by a distinctive presence in soap operas, primetime dramas, and feature films, alongside a legacy as a cultural icon of the era.

Morgan Fairchild is also an activist known for her advocacy on public health issues, particularly AIDS awareness and COVID-19 prevention. She was one of the earliest celebrities to speak out about the HIV/AIDS crisis in the 1980s, using her platform to raise awareness, combat stigma, and support research and funding for treatment. She worked closely with organizations like TFAR (The Foundation for AIDS Research) and has been a vocal advocate for public health education.

Throughout the COVID-19 pandemic, Fairchild actively promoted mask-wearing, vaccination, and public health guidelines through social media and interviews. She used her influence to counter misinformation and encourage preventive measures, continuing her long-standing commitment to science-based health advocacy. Her efforts have made her a respected voice in both the entertainment and public health communities.

Anthony Leonardi, Immunologist

Dr. Anthony J. Leonardi is an American T-cell immunologist recognized for his research on T-cell function and its implications in diseases such as cancer and COVID-19. He completed his Ph.D. at the National Cancer Institute, focusing on T-cell function, dysfunction, and immunity. He is currently a Master of Public Health student at Johns Hopkins Bloomberg School of Public Health.

Dr. Leonardi has contributed to understanding the role of T-cells in cancer immunotherapy, particularly regarding how T-cell differentiation affects therapeutic outcomes. During the COVID-19 pandemic, he investigated the virus’s impact on the immune system, proposing mechanisms by which SARS-CoV-2 may cause T-cell dysfunction and contribute to long-term complications, including Long COVID. His insights have been featured in interviews and discussions addressing the broader implications of COVID-19 on public health.

Dr. Leonardi continues to engage in research and public discourse, emphasizing the importance of understanding immune responses in disease progression and recovery.

Chimere Sweeney, Educator & LC Patient Advocate

Chimére L. Sweeney is an award-winning former middle school teacher, writer, filmmaker, speaker, and prominent advocate for Long COVID patients, particularly within Black and marginalized communities. Born and raised in the United States, she graduated from Morgan State University, an HBCU, with a BA in English/Literature and Language. She spent years teaching English to underprivileged students in Baltimore, Maryland, where she found fulfillment in empowering her students until her career was abruptly altered by health challenges.

In March 2020, shortly after the onset of the COVID-19 pandemic, Sweeney contracted the virus, which marked the beginning of her struggle with Long COVID. What started with mild symptoms like muscle aches quickly escalated into a debilitating condition, including severe whole-body pain, panic attacks, blurry vision, partial hearing loss, cognitive decline, and more. She was forced into early retirement from teaching, with her last day in the classroom being March 13, 2020—a date she remembers vividly as the end of her traditional career.

Facing dismissal, racism, and sexism from medical professionals while seeking treatment, Sweeney turned her personal hardship into a platform for advocacy. She challenged Baltimore hospitals through persistent letters and emails, eventually securing a legitimate Long COVID diagnosis for herself and advocating for better care for other Black patients in urban communities. Her efforts gained national attention when she testified before the U.S. Congress House Committee on Energy and Commerce in 2021 about the disproportionate impact of Long COVID on Black and Indigenous people. This testimony contributed to Congress allocating $1.15 billion for NIH research into the condition. She also participated as a guest panelist in a National Institutes of Health workshop on Long COVID.

Sweeney has since become a leading voice in the Long COVID community, focusing on amplifying the stories of Black patients. She has written for publications like Huffington Post, Medium, She Knows, and contributed a chapter to The Long COVID Survival Guide (edited by Fiona Lowenstein, 2022). Her media appearances include NBC News, PBS NewsHour, and The Washington Post’s Post Live, among others. She founded The Black Long Covid Experience, LLC, to empower Black Americans to advocate for equitable healthcare.

Currently based in Poughkeepsie, New York, with her husband, Taurean Sweeney, she is working on a documentary titled Black and (Un)Believed: Finding #LongCovid Care Through Ancestral Care. The film, still in early development as of 2025, aims to highlight the experiences of Black individuals with Long COVID and their navigation of a dismissive healthcare system. Sweeney has crowdfunded nearly $16,000 toward a $500,000 goal, with plans to complete the project by late 2025 or early 2026. Despite ongoing health challenges—managing over 10-12 medications daily—she remains a passionate activist, redefining her life’s purpose through storytelling and community support.

Dr. Sean Mullen, ETC Director, NIA & NICHD

Dr. Sean P. Mullen is an Associate Professor in the Department of Kinesiology and Community Health at the University of Illinois at Urbana-Champaign. Born and raised in the United States, Mullen earned his Ph.D. in Exercise Psychology from the University of Virginia, following a master’s degree in Exercise Science from West Virginia University and a bachelor’s degree from James Madison University. His academic career has focused on understanding the interplay between physical activity, cognitive health, and self-regulation, particularly through the lens of social neuroscience and precision behavioral medicine.

Mullen directs the Exercise, Technology, and Cognition (ETC) Laboratory, which he established at the University of Illinois, where he has been a faculty member since 2012. His research explores how exercise and innovative interventions—like exergaming, brain training, and thermotherapy—can enhance cognitive function, mental resilience, and long-term physical activity adherence across diverse populations, including those with chronic conditions. His work has been funded by prestigious institutions such as the National Institute on Aging and the National Institute of Child Health and Human Development, reflecting its significance in advancing public health.

While Mullen’s research does not specifically center on COVID-19 advocacy, his expertise in exercise and health behavior became highly relevant during the pandemic. The global crisis highlighted the importance of physical activity for mental and physical well-being, especially as lockdowns and social distancing measures disrupted routines. Mullen’s lab has developed technology-driven strategies to promote exercise adherence, which could indirectly support populations managing the long-term effects of COVID-19, such as fatigue or mental health challenges. However, he is not documented as a public advocate for COVID-19 policies, treatments, or vaccines in the way figures like Dr. Anthony Fauci or patient advocates like Chimére Sweeney (profiled earlier) are.

Dr. Joseph “Jlerollblues” Eastman,

”Dr. Joe’s Covid and Science Newsletter” is authored by Joseph Eastman, an American scientist with over 40 years of experience in fields such as atmospheric chemistry, dispersion modeling, atmospheric science, and ecology. He holds a master’s degree in atmospheric chemistry and dispersion modeling, and a PhD in atmospheric science and ecology. Eastman currently provides COVID-19 guidance to public health entities using a custom-built pandemic model.

His newsletter, launched in July 2022, offers insights into COVID-19 and pathogen news, forecasts, science topics, and political commentary not commonly found in mainstream media. Subscribers receive detailed regional forecasts, news updates, and personal forecasts tailored to specific locations.

Eastman’s COVID-19 modeling approach is distinctive in that it was developed from scratch, rather than relying on existing models. While specific technical details of his model are not publicly disclosed, his extensive background in atmospheric sciences and ecology suggests a comprehensive approach that may integrate factors like viral dispersion, environmental conditions, and ecological impacts. This model is utilized to provide guidance to public health officials, indicating its practical application in real-world scenarios.

Dr. Joseph Eastman @jlerollblues is a formal member, contributor, content creator, Spaces host nightly with his dear friend Becky Ancira Robertson @AnciraBecky & Pandemic Data Modeler at The World Health Network.

Dr. Eastman is currently interested in topics related to public health, particularly the spread of SARS-CoV-2 variants. He shares content such as plots of new daily infections, commentary on variant transmission, and a public service announcement about mask-wearing to prevent the spread of the virus.

He has a strong focus on data-driven observations and public health advocacy.

Julie Lam, Founder of Mask Together America

Julie Lam is the founder of Mask Together America, a grassroots public health advocacy organization established in 2020 in response to the COVID-19 pandemic. Based in New York, Lam is a photographer, writer, and former creative director with a background in advertising, where she crafted award-winning campaigns for Fortune 500 companies like American Express, Motorola, and Time Warner. Her academic credentials include studies at Hong Kong Polytechnic, Massachusetts College of Art, and an MFA in Creative Writing from Lesley University in Cambridge, Massachusetts.

Lam launched Mask Together America initially as a social media campaign to promote mask-wearing, using her skills in street photography and strategic communications. What began with sharing masked portraits evolved into a broader mission advocating for community masking, vaccination, and support for Long COVID patients and COVID-affected families. The organization operates primarily through platforms like Facebook, Instagram, and X (under @TogetherWeMask), reaching hundreds of thousands monthly with educational content, personal stories, and public health initiatives.

Her activism was spurred by personal and communal loss during the pandemic’s early days in New York, including the deaths of frontline workers and friends. In 2021, despite being vaccinated, Lam contracted COVID-19, which worsened her pre-existing IgA Nephropathy and triggered additional autoimmune conditions, leaving her with Long COVID. This experience deepened her commitment to advocating for vulnerable populations, particularly those marginalized by healthcare inequities.

Lam has expanded Mask Together America’s efforts beyond awareness, collaborating with over 30 organizations in 2024 to push for the Home Test to Treat program’s funding and meeting with CDC officials alongside groups like PAN END IT! and Long COVID Justice to influence prevention guidelines. She has spoken at events like the Long COVID protest at the Lincoln Memorial in March 2024 and initiated a “Sickness Prevention” campaign proposal with U.S. senators in April 2023. Her work also includes documenting survivor stories, contributing to Medium’s New York Voice, and co-founding a mask design contest at MassArt in 2020 with her husband, Kapil Mathur, to engage young people in mask advocacy.

A mother and immigrant from Hong Kong who moved to the U.S. in 1987, Lam sees her work as a civic duty, blending her creative talents with a mission to normalize mitigation strategies and protect public health. Despite her health challenges, she remains a vocal figure, emphasizing collective action and equity in the ongoing fight against COVID-19’s impacts.

Deb, @CaffeinatedTdlr, Long Covid Brunch Sunday

@CaffeinatedTdlr is an X user who identifies as a first-wave COVID-19 survivor living with Long COVID. She actively engages with the Long COVID community by hosting online spaces, such as “Sunday Brunch,” where individuals with Long COVID can share their lived experiences. She also shares relevant news and updates related to Long COVID, SARS-CoV-2, and awareness efforts, as indicated by hashtags like #pwLC (people with Long COVID), #LongCovid, and #LongCovidAwareness. Additionally, she relies on mutual aid to help cover medication costs and sustain her advocacy work, encouraging support through platforms like Ko-fi. She continues to focus on community support, raising awareness, and providing a platform for those affected by Long COVID.

Dr. Alice, @calirunnerdoc, Cardiologist

Dr. Alice is a physician, specifically a cardiologist with vascular training. She has shared that she suffers from severe complications due to Long Covid and has been vocal about her experiences with the condition. She aims to provide useful information to colleagues and the public through her personal health journey, particularly focusing on the vascular aspects of SARS-CoV-2-related illnesses. She wishes to maintain her privacy beyond her professional background and health condition, she is an active commentator on medical topics, especially those related to Covid-19 and its long-term effects.

Dr. Wes Wilson, Pulmonary Oncologist & Tumour Immunologist

Dr. Wesley Wilson is a tumor immunologist and cancer researcher affiliated with the University of Pennsylvania’s Perelman School of Medicine. His research focuses on developing new therapies for hard-to-treat cancers, such as childhood brain tumors, adult mesothelioma, and multiple myeloma. Dr. Wilson specializes in modulating the immune response to cancer, employing advanced immunotherapies like checkpoint blockade immunotherapy and CAR-T cell therapy to enhance patient outcomes.

In recognition of his contributions to oncology, Dr. Wilson was honored as one of the “40 Under 40 in Cancer” in 2021, highlighting his role as a promising young professional making significant strides in cancer research.

Beyond his research, Dr. Wilson is committed to science communication and public engagement. He hosts “Tumor Talk,” a YouTube series aimed at supporting cancer patients, their families, and caregivers by providing information and answering questions related to cancer. Dr. Wilson actively promotes these discussions on social media platforms, including Twitter, where he shares updates and schedules for upcoming episodes.

Additionally, Dr. Wilson delivered a TEDx talk titled “Using Your Own Body To Fight Cancer,” where he explores the potential of immunotherapy in revolutionizing cancer treatment. In this talk, he delves into how the body’s immune system can be harnessed to combat aggressive and difficult-to-treat cancers.

Liesl McConchie, Educator & Author

Liesl McConchie is an internationally recognized educator and expert in brain-based learning, with over 25 years of experience in mathematics education and instructional coaching. She began her career as a K–12 math teacher and has since collaborated with more than 300 schools worldwide to integrate neuroscience principles into effective teaching practices.

McConchie is the co-author of the best-selling book Brain-Based Learning: Teaching the Way Students Really Learn with Dr. Eric Jensen. This work bridges cognitive science and classroom strategies, offering educators practical tools to enhance student engagement and achievement.

Her professional development offerings include workshops on brain-compatible learning, equity in math education, and strategies to make math instruction more engaging. McConchie is also developing a new book titled Building a Positive Math Identity: A Brain Science Approach, focusing on fostering students’ confidence and connection to mathematics.

Internationally, McConchie spent over three years in Denmark, where she contributed to founding a school based on innovative pedagogical principles. She designed a year-long social-emotional learning curriculum required for all students and continues to consult with the school, which has been recognized as an Ashoka Changemaker School.

Through her work, Liesl McConchie empowers educators to align teaching methods with how the brain naturally learns, aiming to make learning more joyful, meaningful, and lasting for all students.

Dr. Andrew Ewing, Chemist & Biologist

Dr. Andrew Ewing is a distinguished chemist and molecular biologist, currently serving as a Professor of Analytical Chemistry at the University of Gothenburg, Sweden, and an adjunct professor at Penn State University. His research focuses on electrochemical methods, imaging techniques like mass spectrometry, and optical methods to study neural communication, single nerve cells, vesicles, and molecular processes in cell differentiation and organelle communication.

Dr. Ewing earned his doctorate in analytical and biological chemistry from Indiana University in 1983. He has held prestigious positions, including the J. Lloyd Huck Chair in Natural Sciences at Penn State and being a Knut and Alice Wallenberg Scholar. He is an elected member of the Swedish Royal Academy of Sciences and the Gothenburg Academy of Arts and Sciences.

During the COVID-19 pandemic, Dr. Ewing contributed significantly to public health advocacy, focusing on the neurological impacts of SARS-CoV-2. He co-authored influential papers, including a Delphi Consensus in *Nature* aimed at ending the pandemic’s public health threat. As part of the World Health Network Experts team, he interprets vast literature on COVID-19’s brain effects to inform global health strategies.

Dr. Marjorie Roberts,US Veteran, Certified Life Coach & Covid Survivor

A certified Life Coach and speaker with a Doctorate of Business Administration (Strategy and Innovation) from Capella University (2014) and a Life Coaching Certification (2019). She contracted COVID-19 in March 2020, which profoundly impacted her health and perspective, leading to her focus on coaching others through post-COVID challenges. She’s based in Atlanta and shares her story of surviving severe illnesses, including hospital misdiagnosis, to inspire others. She has been instrumental in the foundation of Mask Together America, an online promasking advocacy group founded in 2021.

Dr. Roberts advocates for resilience and finding inner happiness after trauma, particularly for COVID-19 survivors. Her coaching style is dynamic and authentic, aiming to motivate actionable change and help clients achieve joyful, goal-driven lives. She emphasizes coping mechanisms for mental and emotional recovery, drawing from her personal experience with ongoing health issues like lung nodules and sarcoidosis.

As a life coach, Marjorie champions resilience, post-COVID recovery, and personal transformation, helping others navigate life’s challenges with optimism.

Deborah & Harvey Holloway, Former Professor of Communications, LC Patient & Advocate.

As creators of LongCovidLand.com are two courageous and visionary Long COVID survivors (husband & wife) who transformed their personal battles with a misunderstood illness into a powerful platform for advocacy, education, and healing. Driven not by fame or funding, but by deep empathy and unwavering determination, they built a digital sanctuary where the voices of Long COVID sufferers are honored, amplified, and never forgotten.

These founders have taken the deeply personal and made it deeply impactful. Through storytelling, they are documenting a living history — one that mainstream media and institutions often overlook. By giving people the chance to share their unfiltered experiences, they have not only preserved vital narratives but also fostered a thriving community of resilience and solidarity.

In a world eager to move on, they insist on remembering. In a world prone to silence, they insist on being heard. And in doing so, they’ve created more than just a website — they’ve built a legacy of truth, compassion, and collective strength. LongCovidLand is their labor of love, grief, hope, and fierce advocacy.

Dr. Danielle Beckman – Neuroscientist & Microscopy Storyteller

Dr. Danielle Beckman is not your average neuroscientist—she’s a storyteller of the microscopic world. With a Ph.D. in Neuroscience and a heart devoted to unraveling the beauty and complexity of the brain, Danielle has spent years investigating how neurodegenerative diseases like Alzheimer’s and prion disorders take shape at the cellular level.

But what truly sets her apart is how she brings that invisible world to light—through stunning, almost poetic microscopy photography. Danielle’s images capture the intricate, otherworldly landscapes of neurons, glia, and the hidden architecture of the brain. Her work doesn’t just advance science; it inspires wonder.

Known for her warmth, curiosity, and creativity, Danielle blends rigorous research with a deep sense of humanity. Whether she’s at the microscope, mentoring young scientists, or sharing brain science through vivid visuals and public talks, she makes the complex feel personal—and the microscopic feel monumental.

In Danielle’s hands, science is not only a discipline but an art form—an invitation to see the brain not just as a biological organ, but as a story waiting to be told, one glowing neuron at a time.

Joshua Pribanic, Journalist @PublicHerald

Joshua Boaz Pribanic is a journalist, filmmaker, and environmental advocate who has recently emerged as a prominent voice in the Long COVID community. After personally experiencing the debilitating effects of Long COVID, Pribanic shifted his focus toward raising awareness and advocating for policy change surrounding the condition. In 2023, he founded the Long Covid Action Project (LCAP) to demand government accountability and amplify the voices of millions affected by this chronic post-viral illness.

Pribanic brings to this mission a long-standing commitment to public interest journalism. He is the co-founder and Editor-in-Chief of Public Herald, a nonprofit investigative news outlet known for its award-winning coverage of environmental issues, particularly fracking in Pennsylvania. His investigative films, such as Triple Divide and INVISIBLE HAND (the latter produced with actor-activist Mark Ruffalo), have exposed regulatory failures and championed community rights, setting a strong precedent for his current advocacy work in health justice.

With a background in literature and environmental science from Bowling Green State University and certifications in permaculture from Oberlin College, Pribanic combines investigative rigor with a systems-thinking approach. His work has been cited in hundreds of media outlets and academic studies, and he continues to push for systemic change—now with a spotlight on the growing Long COVID crisis.

Steve T. , Patient & Respirator/Fit test Enthusiast

Steve T. @noxygen is an independent respirator enthusiast and dedicated long COVID advocate, committed to supporting the Covid Cautious and Long COVID communities. As a long COVID sufferer, he brings both personal experience and technical knowledge to their work, helping individuals navigate the complex world of respiratory protection and indoor air safety.

With a focus on empowerment through education, Steve provides hands-on guidance in respirator fit testing, mask selection, and aerosol mitigation strategies. He offers practical advice grounded in real-world application—whether it’s selecting the right elastomeric respirator, optimizing filtration for indoor environments, or understanding airflow and aerosol dispersion in various settings.

Driven by a passion for harm reduction and community health, Steve T. serves as a trusted resource for those seeking to protect themselves and others in a world where airborne pathogens remain a daily concern. His work bridges the gap between technical expertise and compassionate peer support, making respiratory safety accessible, understandable, and actionable for all.

Becky Ancira Robertson — Advocate, Connector, and Champion for Long Covid Visibility

Becky Ancira Robertson is a relentless advocate, Long Covid patient and connector whose work is grounded in the belief that every voice deserves to be seen, heard, and valued—especially those too often ignored by traditional systems. As a passionate ally to the Long Covid community, Becky brings her lived values of justice, empathy, and deep listening into every space she enters.

With a professional background rooted in health equity and systems transformation, Becky has dedicated her life to advocating for those navigating invisible illnesses, chronic conditions, and the often-overlooked aftermath of COVID-19. She understands that healing isn’t just about medicine—it’s about dignity, validation, and being believed. That understanding drives her to uplift stories, demand accountability, and help build the infrastructure needed to support those living with Long Covid.

A beloved presence in the advocacy space, Becky co-hosts nightly Twitter/X Spaces with her dear friend and fellow advocate, Dr. Joe Eastman (affectionately known as Jelly). These nightly gatherings have become a virtual home for community, where people from around the world come together to share updates, amplify science, support each other emotionally, and remind one another they are not alone. Through this space, Becky has helped cultivate a culture of radical care and mutual empowerment, where the personal is deeply political—and always powerful.

For Becky, this work is not a passing project. It is personal. It is urgent. And it is rooted in a vision of a world where Long Covid survivors are not sidelined, but centered—in policy, in science, and in the stories we tell about resilience and recovery.

About Long COVID Awareness Day

International Long COVID Awareness Day was initiated by members of the Long COVID patient community. It began as a grassroots movement in 2023, with significant efforts from patients and advocates to establish March 15 as a day to raise awareness about the condition. One key figure credited with starting this movement is Angela Laffin, a first-wave Long COVID patient who, in January 2023, launched a campaign from her couch. She organized polls within the patient community on social media to determine the date and unite support groups and organizations globally. Her efforts culminated in the first official recognition of the day on March 15, 2023. Additionally, contributions from individuals like Tracey Thompson, who designed the Long COVID awareness ribbon, helped shape the campaign’s identity. This patient-led initiative has since gained traction, with various advocacy groups and organizations endorsing and promoting it worldwide.
The International Long COVID Awareness (ILCA) campaign uses a tricolor ribbon consisting of grey, teal, and black to represent the experiences and challenges faced by those with Long COVID. Each color has a specific meaning, as determined by the Long COVID patient community:

**Grey**: Symbolizes loss and grief, reflecting the profound impact of Long COVID on individuals’ lives, including the loss of health, normalcy, and, for many, loved ones or aspects of their former selves due to the illness.

**Teal**: Represents hope and support, embodying the community’s resilience, the pursuit of recovery, and the solidarity offered by patients, caregivers, and advocates working together toward better understanding and treatment.

**Black**: Stands for loneliness and isolation, capturing the often solitary and misunderstood experience of living with Long COVID, where individuals may feel disconnected from society or unsupported due to the chronic and invisible nature of the condition.

These colors were chosen through polls conducted within the Long COVID community, initiated by advocates like Angela Laffin, to visually convey the past, present, and future dimensions of the Long COVID experience.

Last reviewed on April 30, 2025