The creativity and vision of the participants was evident from the beginning. The project was undertaken with compassionate focus, agile thinking and a enduring spirit of activism. The 3 sessions were dynamic and collaborative, yielding deft insights and innovative design. The diversity within the group was approached enthusiastically. It enhanced the synergetic co-creation and cultivated a virtual, immersive and co-curated exhibition – Long COVID: We Are Here!
https://www.LongCOVIDWeAreHere.com Elements provided by each participant were blended to create the final production, made virtual by the expertise of Sam Baumel.
Long COVID – We Are Here! is a fearless exploration into the long-haul experience aiming to: 1-Raise awareness; 2-Compel an international, funded research agenda; 3-Advocate for a global repository of open access articles, resources, therapeutics & treatment strategies; 4-Urge widespread physician training and patient support. Further, this Long COVID: We Are Here! exhibition unites in solidarity with other debilitating and frequently dismissed syndromes such as Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) for increased visibility and support.
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So, is the pandemic over? Well, certainly some things are better for some people. Many countries are reporting fewer new COVID-19 infections; however, cases have increased in 65 countries. Vaccine disparity is significant. Only 1% of the more than 1 billion vaccines injected worldwide have been administered in Africa. The same issues are being seen in Latin America and the Caribbean. Moreover, 45 percent of vaccine doses that have been administered to date have gone to just 16 percent of the world’s population. The truth is that high-income countries own more than half of all global doses purchased, enough to cover more than twice their adult populations.
Helen Collen, originally from Brooklyn, NY, is an award-winning costume designer of 25 years. 18 of those years were served as the resident costume designer of the Billie Holiday Theatre in Brooklyn where she received a mayoral citation in 2014 for her services as an artist-in-residence. Helen is also a union affiliated wardrobe- supervisor/seamstress/costumer who has worked on Broadway, for major studio films and for television. Her costume designs and wardrobe work have appeared in hundreds of performances around the country that include the Kennedy Center in Washington, DC, CBS LateNight with David Letterman, Radio City Music Hall, ABC’s ‘Dancing With The Stars’, NYC’s classic American Place Theatre, HBO’s ‘The Wire’, Baltimore’s famed Centerstage theatre, to name a few.As a fine art photographer she has successfully exhibited photos three times- twice in New York City and once in Los Angeles. Helen’s medium of choice to showcase her photos is Vibrachrome-a metallic option that allows the reduction of carbon footprints during reproduction. Not being limited to videography, painting, drawing, or avid reading also Helen’s crochet artistry-an eclectic mix of soulful hats, worn by performance artists including Macy Gray, Kelly Ripa and Common, can be found at
Helen’s writing and editing credits are varied and include multiple press and/or media releases, copy for tv, poetry and short stories. As a songwriter (BMI reg.) She co-writes songs with her husband Phil Collen, lead guitarist of Def Leppard and singer god-mother Debbi Blackwell- Cook for the blues-rock-n-soul band DELTA DEEP featuring Phil on guitar and sharing lead vocals with Debbi. “Delving further into different creative mediums for a continued sense of exploration, expression and fulfillment is a continuous journey”, she states. “I am very grateful to be excepted into a community merging art and science for the sake of ignited resolution-a fiery exclamation of the need to find a permanent end to long haul Covid. And I do believe with all my heart there is an end.”.
Dominik Havsteen-Franklin is a Professor of Practice (Arts Therapies) at Brunel University, with a Ph.D. in Art Psychotherapy and Metaphor. He is also head of the International Centre for Arts Psychotherapies Training (ICAPT) for Central and North West London NHS Foundation Trust, Vice President for the European Federation of Art Therapy and a member of the Council for the British Association of Art Therapists. His research focuses on applying empirical methods to investigating and evaluating the use of arts to facilitate changes in health conditions. His recent research has centred on co-designing and investigating arts-based dynamic interpersonal therapy (ADIT) for depression, creative and resilience engagement (CaRE) for frontline healthcare workers, developing arts-based psychosocial practice in South Africa, and is a co-applicant for an NIHR funded large scale RCT (ERA) investigating the effectiveness of arts therapies for heterogeneous groups in mental health services. Dominik supervises PhD students from a range of arts disciplines. He also continues to work as a consultant, an art psychotherapist and a clinical supervisor for the National Health Service. Recent articles include: https://www.sciencedirect.com/science/article/abs/pii/S0197455620301209?via%3Dihub https://www.frontiersin.org/articles/10.3389/fpsyg.2020.589744/full
Ali Pattillo is a journalist, audio, live event producer working as a reporter at Inverse magazine covering health, climate change and science. Previously, Ali covered health at CNN with Dr. Sanjay Gupta. She graduated from Columbia Journalism School in 2019 and Dartmouth College in 2017. She produced the Fourth International Vatican Conference: Unite To Cure in 2018. The interdisciplinary conference broght together scientific, political, business, and faith leaders to explore how science, technology, and 21st century medicine will impact culture and society.
https://vaticanconference2018.com/ She has written multiple articles about Long COVID, the most recent, 12/7/2020 Inside the Virtual World of Covid-19 Long-Haulers discusses the experience of long COVID including personal reports of symptoms, challenges and the need for research and treatments.
The archive of Ali’s work at Inverse, can be accessed here:
Ali Pattillo website:
Pato Hebert, MFA is an artist, educator and organizer. Hebert’s artwork explores the challenges and possibilities of interconnectedness. His projects have been presented at the Ballarat International Foto Biennale, the Songzhuang International Photo Biennale, the Centro de Arte Contemporáneo in Quito, Beton7 in Athens, PH21 Gallery in Budapest and IHLIA LGBT Heritage in Amsterdam. Hebert’s work has been supported by grants from the Rockefeller Foundation, the Creative Work Fund and the California Community Foundation. In 2008 he received the Excellence in Photographic Teaching Award from Center in Santa Fe. He serves as Chair of the Department of Art & Public Policy at Tisch School of the Arts, New York University, where his students have twice nominated him for the David Payne-Carter Excellence in Teaching Award.
Shona Patterson, PhD (Brunel University, London) Shona Paterson, PhD (Brunel University London) has a transdisciplinary background in Natural Sciences (Marine Biology, Coastal Resource Management) and Social Science (Climate Adaptation, Social Justice, Governance). With a special interest in marginalized communities and social justice and equity, Shona’s recent research has focused on global flood risk and resilience, adaptation, and adaptive capacity in urbanizing coastal areas. Paramount to Shona’s work is the generation of defensible research informed by the needs of society and co-created with intended beneficiaries. Her work not only bridges science and policy but also focuses on effective and fit-for-audience communication of data and knowledge to ensure increased open and impactful discourse around risk. Paterson, S. et al (2020). Examining the Potential of Art-Science Collaborations in the Anthropocene: A Case Study of Catching a Wave, Frontiers in Marine Science, 7, 340.
Heather Raikes, Ph.D., is Founder and Director of Neopoetics, a creative research studio innovating at the intersection of future-focused art and design research and the developing immersive technology ecosystem (XR/VR/AR/MR). Drawing upon decades of creative inquiry in media art, human-computer interaction design, UX, 3D visualization, immersive storytelling, performance, video, animation, and embodiment, Neopoetics probes, discovers, and creates emergent sensory experience. Heather led production of groundbreaking early XR experiences and applications, including The Holographic Workstation financial data visualization that forged new models for 3D information design; SK-II’s holographic story experience for the Tokyo Olympic Pavilion; Capturing Everest VR, a 360 video documentary of an Everest summit that won a Digital Innovation Emmy Award. She has a Ph.D. in Digital Arts and Experimental Media. Her work has been exhibited throughout the world at venues such as ISEA International, Culturest, On the Boards, Henry Art Gallery, and The Kennedy Center, and granted fellowships with the Center for Advanced Inquiry in the Interactive Arts and Oculus Launch Pad. Heather is a former professional modern dancer with the Erick Hawkins Dance Company. Her creative work is uniquely rooted in the body, and in the design of embodied interfaces with emerging technological systems.
Jeffrey N. Siegelman, MD is an Associate Professor of Emergency Medicine and Associate Residency Director at Emory University School of Medicine. His academic interests include ophthalmologic emergencies, as well as using simulation for resident education and assessment. He is experiencing Long COVID and has been vocal about advocacy for research and treatment. Siegleman, J. N. (2020). Reflections of a COVID-19 Long Hauler, JAMA, 324(20):2031-2032.
Karta Thomas is a ceramicist working on her degree at University of the Arts Central St. Martin’s, London. She is also an advocate for social change related to ME/CFS, recognizing the overlap of suffering and disease course between ME/CFS and Long COVID. When a virus she contracted in 2007 left her with profound protracted fatigue and multisystemic dysfunction, she experienced first-hand the invisibility, disbelief and underfunding that post-viral syndromes are met with. It took her 2 years to receive a diagnosis of ME/CFS and a further year to obtain medical tests and help. Her condition is largely self-managed through her own research on ME/CFS forums and associations. She is one of the moderators on an ME/CFS/Fibromyalgia online forum counting 4.1K members worldwide. She is a volunteer participant in the “Cure M.E.” Biobank study conducted by the London School of Hygiene & Tropical Medicine.
She is part of the Bethlem Gallery artist led research group.
She is a qualified Hatha, Kundalini and Laughter Yoga teacher. She specialized in Yoga for ME/CFS and as such she is on the advisory panel of a yoga charity.
She worked 20 years in the pharmaceutical industry, in R&D Coordination and Regulatory Affairs, interfacing with The European Medicines Agency. On re-joining the workforce after 4 years of interruption due to ME/CFS, she became a Rehabilitation Worker for the Visually Impaired and later worked in the NHS as an ECLO at Moorfields Eye Hospital in London, where she helped patients navigate the practical and emotional impact sight loss had on their life. Instagram: