Alleviate suffering from invisible illnesses.
Large Impact Initiatives
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About Invisible International
Our top priority is vector-borne illnesses like Lyme disease and other tick-borne illnesses, and we see power in aligning with a full spectrum of invisible illness. These are conditions where a person’s pain and suffering are hidden from view. These illnesses are typically not well understood by the medical practitioners, who are working in a system that hasn’t yet developed effective diagnostics, treatments, or cures.
There are many labels for these invisible illnesses—Lyme disease, long COVID, myalgic encephalomyelitis/chronic fatigue, environmental illness, depression, and more—but on some level, they are all one. Society has chosen to turn away from their suffering, leaving these people invisible, alone, and without hope. The suffering of those with invisible illnesses goes beyond pain and dysfunction. They also experience stigma, marginalization, bias, and discrimination from the medical system, employers, government agencies, and society. Other factors, such as race, gender, class, citizenship, and climate change, can worsen their situations. Their inability to live a normal life leaves finances in ruins, and families and friendships fractured. In our society, there is little patience for these time-consuming, difficult cases, so these citizens are often abandoned by the health-care system, rendering them invisible.
Invisible International is working to lift this cloak of invisibility by shining a light on their needs through medical education, research, and community empowerment. We want to help society understand their plight, increase research funding for their illnesses, and empower these people to obtain the just and equitable health care that they deserve.
Our impact and accomplishments are reflected in our triad of programs:
Education: In a short 22 months, we have published a library of 20 no-cost, accredited continuing medical education (CME) courses on diagnosing and treating vector-borne diseases, accessible to both physicians and patients online. The Montecalvo Foundation Platform for Tick-borne Illness Education is growing: we currently have nine new courses in the development pipeline. Additionally, we are looking for philanthropic partnerships to grow two additional education programs:
Bench-to-Bedside Network: A lively, moderated forum that brings together Vector-Borne Disease (VBD) researchers and clinicians to share early ideas and evidence on promising new research and treatments, posted online for worldwide access.
Medical School Curriculum Refresh: Up-to-date Lyme disease/Bartonellosis/tick-borne disease curriculum modules and grand rounds lectures are being developed so they can be offered to medical schools across the U.S.
Research: Invisible is engaged in original research designed to accelerate the movement of evidence on better diagnostics, treatments, and cures to patient care.
Our major research focus this year is Tick Bytes Clinical Data Research Platform. This is a nationwide clinical data repository that provides quality de-identified tick-borne illness patient data to researchers, in order to facilitate the development of better symptom profiles, diagnostics approaches, and treatment protocols. The design of this research study will bring new clinical approaches fast, so patients can get back to living their lives fully.
Community Empowerment: We are managing a diverse set of projects with a common aim—to foster public understanding, compassion, prevention strategies, and solution development for those suffering from invisible illnesses. In 2020, we hosted the first-ever Tick-borne Illness Education and Prevention hackathon. Eight teams created new solutions to this challenge, including the Tick Jedi and the Tick Check Challenge.
In 2021-22, the Lovell Innovation Tick-borne Illness Diagnostics Development Incubator will bring together teams of multidisciplinary innovators to look at diagnostic protocols, processes, and tests anew, with an eye to accelerating better solutions to market. This effort is coordinated with the HHS/Cohen Foundation’s LymeX Diagnostics Moonshot competition.
Mental Health Platform for Invisible Illnesses: a team of clinicians, mental health counselors, and psychiatrists will develop an online educational platform for training more support group facilitators on effective chronic disease management, accessible to professionals worldwide. This will also include direct patient support from a mental health counselor. We are currently seeking a philanthropic partnership to launch this program.
Storytelling for Change: Led by the accomplished science writer Kris Newby, a team of clinicians, researchers, and writers work together to publish popular media stories that explain invisible illnesses, including the emerging science, the injustices, and the societal impacts. Direct support to this platform will enable the team to produce more media stories.