Visual Snow Initiative - Collaborate, Educate, And Cure
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Visual Snow Initiative
COLLABORATE, EDUCATE, AND CURE
Visual Snow Syndrome (VSS) is a neurological condition that can affect vision, hearing, cognition, sensory processing, and overall quality of life.
The main characteristic of VSS is the constant perception of visual snow, which appears as static, flickering dots or flashing lights seen 24/7, whether the eyes are open or closed. Many describe it as trying to see through a snowstorm or a shaken snow globe. However, VSS typically involves more than just visual snow. Those with VSS commonly experience a range of other persistent, debilitating visual and non-visual symptoms. The condition is estimated to affect 2-3% percent of the global population and can impact people of all ages.
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. To date, VSI has been contacted by individuals affected by VSS in over 93 countries. Together, we can take action to drive progress for VSS.
Get Involved Visual Snow 101What is Visual Snow Syndrome?
Whether you are hearing about Visual Snow Syndrome (VSS) for the first time or struggling to explain it to others, this video is for you.
Physicians can also share it with patients or colleagues to help improve understanding of VSS.
While VSS is complex, explaining it does not have to be.
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Support VSS research and the search for a cure.
LEARN
Use our diagnostic tools and educational resources.
JOIN THE CAUSE
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What is It Like Having VSS? Visual Snow Syndrome Symptoms
Visual Snow Syndrome (VSS) can impact individuals of any age or background, presenting a range of both visual and non-visual symptoms.
Visual & Non-Visual Symptoms
- Visual snow (dynamic, snow-like dots across the entire visual field)
- Palinopsia (continuing to see an image after the stimulus has been removed)
- Photopsia (flashes of light or small floating objects)
- Enhanced entoptic phenomena (excessive floaters and rings of light shooting across the entire visual field, more noticeable when looking at bright surfaces like the blue sky)
- Photophobia (sensitivity or intolerance to light)
- Nyctalopia (impaired night vision)
- Diplopia (double vision)
- Visual distortions
- Susceptibility to sensory overload (when the brain receives more sensory input than it can handle, triggering a "fight-or-flight" response)
- Hyperacusis (increased sensitivity to sounds, especially those at specific frequencies)
- Phonophobia
- Tremors (involuntary, rhythmic movements of the body)
- Balance issues (difficulty maintaining body position or stability)
- Dry eyes
- Other visual phenomena, such as starbursts and halos
- Tinnitus (ringing or buzzing sound in the ears)
- Anxiety
- Depression
- Derealization
- Depersonalization (feeling detached from yourself)
- Frequent migraines
- Brain fog and confusion
- Dizziness
- Nausea
- Paresthesia (tingling "pins-and-needles" sensations, commonly experienced in the arms, hands, legs, and feet)
- Insomnia and other sleep disturbances
- Sensory disturbances (such as "brain zaps" or electric shock-like sensations)
- Sensory hypersensitivity / hyperesthesia (increased sensitivity to stimuli, such as sights and sounds)
- Cutaneous allodynia (pain sensation on the skin or scalp from non-painful stimuli, such as a hairbrush on the scalp or glasses on the nose/ears)
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 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.
Explore the TimelineRecent Highlights
Research Visual Snow Initiative Founder, Sierra Domb, Featured in Global Genes 
Sierra Domb Global Genes, a leading global nonprofit dedicated to supporting and connecting the rare disease community, recently featured Sierra Domb, Founder of the Visual Snow Initiative (VSI). In the article, Sierra… 
Research Altered functional connectivity strength between structurally and functionally affected brain regions in visual snow syndrome 
Vanessa Mora Previous studies of Visual snow syndrome (VSS) have shown abnormalities in brain regions involved in visual perception and sensory integration. This study aimed to better understand how these regions communicate… 
Research Visual Snow Initiative Roundtable: Global Visual Snow Syndrome Experts Unite to Discuss Ongoing Research Findings, Explore Potential Treatments, and Build Resources for VSS 
VSI Authors The Visual Snow Initiative (VSI) recently released video highlights from its latest VSI Roundtable Discussion, featuring some of the world’s leading researchers dedicated to understanding and addressing Visual Snow Syndrome… 
Awareness Sierra Domb, Founder of the Visual Snow Initiative, on Visual Snow Syndrome: An Open Letter to Friends, Family, Educators, Employers, and Healthcare Providers Sierra Domb Sierra Domb, Founder of the Visual Snow Initiative, shares a heartfelt open letter on Visual Snow Syndrome (VSS), its symptoms, challenges, and the importance of ongoing understanding and support for… 
Research Electroencephalographic Resting-State Microstates are Unstable in Visual Snow Syndrome Vanessa Mora Authors: Sarah A. Aeschlimann, Antonia Klein, Frédéric Zubler, Christoph J. Schankin, Matthias Ert. Introduction Visual Snow Syndrome (VSS) affects visual, sensory, and attention networks in the brain. People with VSS… 
Research New Visual Snow Syndrome Study on Neuromodulation in Spain and Portugal Vanessa Mora The Visual Snow Initiative (VSI) is advancing new research on Visual Snow Syndrome (VSS) and neuromodulation, a non-invasive and benign treatment emerging as a potential therapeutic approach for a range… Our Collaborators
Some of the institutions VSI has worked with include:
Massachusetts Institute of Technology
Cambridge, MA, USA
Monash University
Melbourne, Australia
Moorfields Eye Hospital NHS Foundation Trust
London, England
University of Bern
Bern, Switzerland
King’s College
London, England
University of Oxford
Oxford, England
University of California, Los Angeles
California, USA
AnCan
Arizona, USA
University of Colorado
Boulder, CO, USA
Imperial College
London, England
McGill University / Université McGill
Montreal, Quebec, Canada
NIHR National Institute for Health and Care Research
Cambridgeshire, United Kingdom
Binghamton University
New York City, USA
Patient Worthy: Rare Patient News. Well Done.
Virginia, USA
University of Queensland
Brisbane, Australia
York University
Toronto, Ontario, Canada
University of Toronto
Toronto, Ontario, Canada
Oxford Mindfulness Foundation
Oxford, England
The University of Sheffield
Sheffield, England
University of Perugia
Perugia, Italy
Bournemouth University
Poole, England
University of Minnesota
Minnesota, United States
Sechenov University
Moscow, Russia
Tiny Studios
London, England
Global Genes
Washington, DC, United States What Experts Are Saying About VSIVisual Snow Initiative Professional Testimonials
“The recognition of Visual Snow, broadening education, and funding research would not have happened were it not for the Visual Snow Initiative. The condition is now being studied actively by a number of groups on several continents. Research would be idling in a backwater without VSI. Thank you to the Visual Snow Initiative for all you have done and continue to do.”
Dr. Peter GoadsbyMD, PHD, DSC, PROFESSOR OF NEUROLOGY AT UCLA, RECIPIENT OF THE 2021 BRAIN PRIZE “Almost single-handedly, the Visual Snow Initiative has educated Visual Snow Syndrome patients and helped them understand that they have a true disorder. Their team has played a pivotal role in bringing together Visual Snow patient groups with physicians and researchers from around the world.” 
Dr. Owen WhitePHD, MD, M.SC, MB.BS, OCULAR MOTOR RESEARCH UNIT, "FIELDING/WHITE GROUP," DEPARTMENT OF NEUROLOGY “Visual Snow Initiative is the key player dedicated to improving the well-being of individuals affected by visual snow syndrome. VSI is crucial in all aspects: raising awareness, promoting education, and – importantly – supporting and coordinating research. They were able to contact clinicians and initiate research. This resulted in the definition of criteria for visual snow syndrome that are now used all over the world and an enormous increase of our understanding of the underlying mechanisms.” 
Dr. Christoph SchankinMD, PHD, ASSOCIATE PROFESSOR & HEAD OF THE INSELSPITAL HEADACHE CLINIC, DEPARTMENT OF NEUROLOGY “The VSI has been instrumental in raising awareness and acceptance of Visual Snow Syndrome as a neurological condition, educating patients about their disorder, and kickstarting the efforts made by researchers to understand what underlies their myriad of visual and other sensory symptoms. The work initiated by VSI has ensured that physicians and ophthalmologists are now mindful of the constellation of symptoms that define the syndrome, ensuring that patients’ concerns are not dismissed and that patient resources are now available.” 
Dr. Joanne FieldingPHD, OCULAR MOTOR RESEARCH UNIT, "FIELDING/WHITE GROUP," DEPARTMENT OF NEUROLOGY “The VSI has played an incredible role in the advancement of VSS awareness, education, and research. I have had patients who made their own accurate diagnosis of VSS on the basis of their information. And I am able to use the VSI’s webpages as a trustworthy resource that allows my patients a place to land for information after the diagnosis.” 
Dr. Victoria PelakMD, PROFESSOR OF NEUROLOGY AND OPHTHALMOLOGY, UNIVERSITY OF COLORADO SCHOOL OF MEDICINE "Discovering the Visual Snow Initiative (VSI) was a true lifeline. I am deeply grateful for the inspiration and leadership of Sierra Domb, whose work continues to light the way for others, and to collaborate on such an important cause. It has been an honor to produce videos that raise awareness and aim to shorten the time to diagnosis for Visual Snow Syndrome patients through VSI." 
Natalie Scott PRODUCER, PROJECT MANAGER AT TINY STUDIOS The Visual Snow Initiative has released its newest Roundtable Discussion video, hosted by VSI Founder and medical advocate Sierra Domb. This collaborative, conversation-style meeting brings leading experts in Visual Snow Syndrome (VSS) together to share research, compare findings, ask critical questions and learn more for future studies.
The discussion features a panel of experts from around the world, many of whom pioneered the earliest research, contributed to key milestones in the recognition and understanding of the condition, and continue to lead advancements in their field. The panel includes Dr. Christoph Schankin, Dr. Peter Goadsby, Dr. Edward Boyden, Dr. Francesca Puledda, Prof. Osvaldo Gervasi, Prof. Damiano Perri, Dr. Owen White, Dr. Sui Wong, and Dr. Alexander Baldwin.
Visual Snow Initiative RoundtableVisual Snow Syndrome Discussion
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:
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.
VSI News & ResearchLatest Updates
Our News & Research section features important updates on the Visual Snow Initiative, including research studies, interviews, projects, and other relevant information about our global efforts and progress regarding Visual Snow Syndrome.
Research Visual Snow Syndrome: Surgery Preparation, Considerations, and Supporting Recovery VSI Authors For individuals living with Visual Snow Syndrome (VSS), the thought of surgery can bring anxiety and concern. Many patients worry not only about the procedure itself, but also about how… 
Interview Bestselling Author Samantha Shannon Shares Her Experience with Visual Snow Syndrome VSI Authors Samantha Shannon is a bestselling author from London who writes epic fantasy and dystopian novels. Alongside her writing career, Shannon lives with Visual Snow Syndrome (VSS), a neurological condition she… 
Awareness Dating and Relationships with Visual Snow Syndrome: VSS-Friendly Date Ideas and Experiences VSI Authors Living with Visual Snow Syndrome (VSS) can affect more than just vision, it can influence daily life, emotional well-being, and how people experience dating and relationships. This article is designed… 
Education Visual Snow Initiative Educates Future Ophthalmologists on Visual Snow Syndrome at University of Montreal VSI Authors Members of the Visual Snow Initiative (VSI) team, including Founder Sierra Domb and Director of Research Vanessa Mora, recently spoke with ophthalmology students at the University of Montreal’s Ophthalmology and… Research Visual Snow Initiative Founder, Sierra Domb, Featured in Global Genes Sierra Domb Global Genes, a leading global nonprofit dedicated to supporting and connecting the rare disease community, recently featured Sierra Domb, Founder of the Visual Snow Initiative (VSI). In the article, Sierra… 
VSS Affects Individuals of All Ages Worldwide
Read Their StoriesLiving with Visual Snow Syndrome
A Visual Snow Initiative x Tiny Studios Short Film
The Visual Snow Initiative, in collaboration with Tiny Studios, created this short film to share the experiences of people of all ages living with VSS and to raise awareness of this neurological condition.
The film’s producer and project manager, Natalie Scott, also lives with VSS. Her personal connection gave this project authenticity and heart, helping to highlight the voices of others affected by the condition.
In the video, people of different ages across the UK share their experiences with VSS. Their stories reveal both the challenges and resilience of the community, including diverse journeys, coping strategies, symptoms, and more.
At the Visual Snow Initiative, we work to raise awareness, educate, and connect people living with Visual Snow Syndrome (VSS) across the globe. This film is one step toward helping others better understand VSS and its impact.
PURPOSE The Visual Snow Initiative
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), a neurological condition affecting an estimated 2-3% of the global population. VSS can impact vision, hearing, cognition, sensory processing, and quality of life for individuals of all ages.
Founded in 2018 by Sierra Domb, VSI was established after she experienced the onset of VSS. Sierra organized the first Visual Snow Conference, bringing together researchers and medical professionals from around the world to form a Global Research Team. This collaboration has resulted in groundbreaking research on symptomatology, pathophysiology, brain network mechanisms, neurotransmitter activity, biomarkers, and treatment strategies where none previously existed for VSS. The Visual Snow Initiative has also helped drive a fourfold increase in research and publications on Visual Snow Syndrome.
The Visual Snow Initiative (VSI) has led research in 7 countries and secured ICD recognition from the World Health Organization for both Visual Snow Syndrome (VSS) and Visual Snow, the first global medical acknowledgment of the condition. VSI has built one of the largest collections of VSS resources, with around 790 items including videos, guides, articles, patient stories, tools, and clinician listings for patients, caregivers, and healthcare professionals. Key achievements include creating the first Diagnostic Criteria for VSS, launching a Global Directory of VSS Physicians, producing 300+ educational videos, developing physician-patient resources, establishing the first pediatric platform for children with VSS, and raising awareness through multimedia initiatives.
The foundation of Visual Snow Initiative (VSI) is exemplified in its ethos: Collaborate, Educate, and Cure. These have guided the VSI team to foster interdisciplinary collaboration with international medical experts, educate the public and healthcare professionals about Visual Snow Syndrome (VSS), and fund scientific studies to support researchers in advancing understanding, treatment options, and the long-term pursuit of discovering a cure for VSS.
All donations to VSI directly support scientific research aimed at understanding Visual Snow Syndrome, developing safe and effective treatment options, and ultimately finding a cure. As research progresses, VSI’s team simultaneously builds global collaborations, raises awareness among public and medical communities, and creates multimodal educational resources designed to help both patients and medical professionals.
Donate Origin of VSIThe Visual Snow Conference
One of the earliest efforts of the Visual Snow Initiative (VSI) 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.
WATCH NOWNEWS & RESEARCH
Our News & Research section features important updates on the Visual Snow Initiative, including research studies, interviews, projects, and other relevant information about our global efforts and progress regarding Visual Snow Syndrome.
Read MorePHYSICIANS & SPECIALISTS
VSI’s Physicians & Specialists Directory features medical professionals from around the world. Many have worked with individuals living with Visual Snow Syndrome, who then referred them to us and affirmed their familiarity with the condition.
Read MoreVISUAL SNOW WARRIORS
These inspiring individuals with Visual Snow Syndrome have shared their experiences and how they manage its symptoms.
Read More Explore Our WebsiteVSI Website Walkthrough
This detailed video guide is designed to help you navigate the information and resources about Visual Snow Syndrome (VSS), the Visual Snow Initiative (VSI), and more available on our website.
- Discover the latest updates and enhancements on our website.
- Access new features and tools designed to assist VSS patients, medical professionals, and researchers.
- Learn how to quickly find essential information and resources related to VSS, VSI, and more.
- Check out how our new layout improves your browsing experience.
- Explore ways to connect with others and support the VSI’s mission.
If you need help navigating our website or are searching for something specific but are not sure where to begin, we recommend watching this tutorial.
WATCH VIDEO"At the heart of everything we’ve done is the goal of making a positive difference for people of all ages affected by Visual Snow Syndrome. If our efforts have helped even one person facing similar challenges, I consider that an honor. I hope my story and our work through the Visual Snow Initiative can continue to inspire progress and understanding for this condition worldwide."
SIERRA DOMB, FOUNDER
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