OUR MISSION
The Visual Snow Initiative (VSI) is a nonprofit organization that was created to establish global awareness, education, recognition, resources, and research for Visual Snow Syndrome (VSS).
Sierra Domb founded VSI after experiencing the debilitating onset of VSS at the age of 21. During her struggle, she faced marginalization and mistreatment due to the widespread lack of awareness, all while enduring severe symptoms without any available resources. This was not an isolated occurrence; for decades, individuals with VSS experienced marginalization, and misdiagnosis. Despite clinical documentation of the condition dating back to 1944, it remained largely overlooked by the medical field.
In 2018, driven by her own challenging medical journey and a desire to help others, she organized the first Visual Snow Conference and brought together medical professionals and researchers from around the world to form a Global Research Team of VSS experts, collaborating to advance progress.
VSI is guided by its commitment to Collaborate, Educate, and Cure. These principles drive the VSI team to foster collaboration with international medical experts, educate the public and healthcare professionals about VSS, and support research aimed at improving understanding, treatment, and a potential cure.
Everyone at VSI has a personal or professional connection to Visual Snow Syndrome. Whether they live with VSS, support someone affected by VSS, have a personal connection to the condition, or advance research, awareness, and care, each person is driven by a desire to help. Our collaborators are clinicians, researchers, and professionals who believe in our mission and share their expertise. VSI’s core team is made up of volunteers and members who self-fund VSI’s day-to-day internal efforts and dedicate their time because they care about making a difference. All donations VSI receives go directly to VSS research.
Since its inception, VSI’s team has brought together renowned and passionate Visual Snow Syndrome experts, physicians, scientists, and researchers from around the world, all committed to advancing scientific understanding and progress in the field. Their research has explored critical areas such as symptomatology, pathophysiology, brain network mechanisms, neurotransmitter activity, biomarkers, and treatment strategies. The team’s expertise has spanned a broad array of scientific disciplines, including neurology, neuro-ophthalmology, ophthalmology, optometry, neuroscience, neurobiology, and advanced technology.
The Visual Snow Initiative (VSI) has developed one of the largest global collections of resources on Visual Snow Syndrome (VSS) with an estimated new 790 resources to date. These include videos, guides, articles, patient stories, tools and clinician listings. All are intended for use by individuals, caregivers and healthcare professionals worldwide.
Every donation to the Visual Snow Initiative directly supports studies and clinical trials on Visual Snow Syndrome conducted by our global network of researchers, while our team raises awareness and develops multimodal educational and physician-patient resources for VSS.
About the Visual Snow Initiative
The Visual Snow Initiative (VSI), created in 2018 by Sierra Domb at age 23, is an international nonprofit with a multifaceted mission to advance awareness, education, resources, and research for Visual Snow Syndrome (VSS). Affecting an estimated 2-3% of the global population, VSS is a legitimate neurological condition that impacts vision and sensory processing. Although “visual snow” was described in clinical reports in the U.S. as early as 1944, the condition was ignored by the medical community, often dismissed as unreal, mistaken for a structural eye problem, or misattributed to psychiatric causes, leading to widespread misinformation, misdiagnosis, and mistreatment of patients of all ages worldwide. VSI was founded to provide people with VSS and their loved ones access to vital, tangible resources that had not previously existed while establishing the foundational infrastructure to legitimize a marginalized condition, advance scientific understanding, and support researchers working toward the long-term discovery of a cure.
Building a Global Foundation for Collaboration and Progress
From its inception, VSI has worked to bridge long-standing gaps in the field by fostering multidisciplinary collaboration among medical professionals who had not previously communicated and connecting global researchers, clinicians, and patients around a shared purpose. Through teamwork and education, the VSI team ignited international collaborative research efforts, developed new patient resources and clinical tools, and built broader awareness and medical legitimacy for VSS, including its official recognition as a neurological disorder by the World Health Organization (WHO). This approach became the organization’s guiding principle, reflected in its ethos, “Collaborate, Educate & Cure”, and carried forward through the advocacy, efforts, and leadership of its founder, Sierra Domb.
Visual Snow Timeline & Milestones
The Visual Snow Timeline & Milestones shares the history of Visual Snow Syndrome (VSS) and the work of the Visual Snow Initiative (VSI). It explains how VSS was first described in the 1940s and later understood as a brain condition, not an eye condition. The timeline includes important moments such as the start of VSI, key research discoveries, growing awareness around the world, the creation of a global doctor directory, and the approval of official medical codes. It shows how knowledge, research, and support for people with VSS have grown over time.
Our Collaborators
Some of the institutions VSI has worked with include:
Massachusetts Institute of Technology
Monash University
Moorfields Eye Hospital NHS Foundation Trust
University of Bern
King’s College
University of Oxford
University of California, Los Angeles
AnCan
University of Colorado
Imperial College
McGill University / Université McGill
Binghamton University
Patient Worthy: Rare Patient News. Well Done.
University of Queensland
University of Toronto
Oxford Mindfulness Foundation
University of Perugia
Bournemouth University
University of Minnesota
Sechenov University
Tiny Studios
Global Genes
York University
World Health Organization
CNBC Cures
Visual Snow Initiative Medical Professional Testimonials
Sierra Domb Announces Historic ICD Recognition of Visual Snow Syndrome
In 2024-2025, VSI Founder Sierra Domb, alongside Dr. Peter Goadsby and Dr. Owen White, led a landmark initiative through the Visual Snow Initiative (VSI) that resulted in a historic breakthrough: official ICD recognition by the World Health Organization for both Visual Snow Syndrome (the neurological condition) and Visual Snow (the hallmark visual symptom involving persistent static). This marked the first time Visual Snow Syndrome was formally acknowledged within global medical and scientific frameworks. The achievement represented a pivotal advancement for individuals who had long been marginalized and dismissed since the condition was first documented in 1944. By securing this recognition, VSI catalyzed progress in diagnosis, research, and treatment access worldwide, offering long-overdue validation to those affected by this historically misunderstood condition.
The Origin of the Visual Snow Initiative
The Visual Snow Initiative (VSI) was founded by Sierra Domb in response to the widespread lack of information and resources available for those affected by Visual Snow Syndrome (VSS). Recognizing the need for greater awareness, education, research, and solutions for VSS, she sought to address issues like unnecessary medical testing, misdiagnosis, marginalization, trauma, and the lack of understanding within the medical community, as well as the isolation many with VSS experience.
Global Awareness & Research
VSI has received reports from individuals affected by VSS in over 93 countries. Our team has collaborated with international VSS experts and facilitated connections to strengthen global research efforts. Through these collaborations, we have raised awareness and contributed to generating interest and support for VSS-related studies.
Developing & Identifying Solutions
VSI has produced scientific studies, facilitated the development of viable treatment options where none previously existed for VSS, and organized events. Our team has also created accessible resources, including diagnostic tools, clinical guides, and educational content for individuals affected by VSS and medical professionals.
The Visual Snow Conference
Organized by Sierra Domb and the VSI team, one of their earliest efforts was the establishment of the first-ever Visual Snow Conference. Held on May 5th, 2018, at the University of California, San Francisco (UCSF), Sierra and her team hosted a free summit that brought together individuals affected by VSS, their loved ones, and experts from around the world. Doctors, researchers, and scientists with expertise in VSS traveled from Australia, Canada, England, and various cities across the United States. Alongside Sierra, they offered acknowledgment and validation to patients and their families. The event aimed to raise awareness, share the current body of research, provide education, offer resources, and foster a deeper understanding of VSS.
Medical & Scientific
Publications
Our global impact and VSI-funded research studies have been featured in the following medical and scientific journals, as well as clinical databases:
Support VSS Research Today
Every donation to the Visual Snow Initiative funds critical Visual Snow Syndrome (VSS) research. Your tax-deductible contribution drives global research efforts and creates a meaningful impact on the lives of those affected by VSS.