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.
What 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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Use our diagnostic tools and educational resources.
JOIN THE CAUSE
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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.
Recent Highlights
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
NIHR National Institute for Health and Care Research
Binghamton University
Patient Worthy: Rare Patient News. Well Done.
University of Queensland
York University
University of Toronto
Oxford Mindfulness Foundation
The University of Sheffield
University of Perugia
Bournemouth University
University of Minnesota
Sechenov University
Tiny Studios
Global Genes
Visual Snow Initiative Professional Testimonials
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 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.
Latest 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.
VSS Affects Individuals of All Ages Worldwide
Living 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.
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.
The 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.
NEWS & 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.
PHYSICIANS & 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.
VISUAL SNOW WARRIORS
These inspiring individuals with Visual Snow Syndrome have shared their experiences and how they manage its symptoms.
VSI 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.
"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."
