Visual Snow Initiative’s groundbreaking efforts, both past and present, have been pivotal in advancing global recognition and understanding of Visual Snow Syndrome (VSS).
Through collaboration with researchers, supporters, and medical professionals, the Visual Snow Initiative has raised awareness, expanded education, supported research, and contributed to treatment development, while providing essential resources to improve the quality of life for those affected by VSS worldwide.
On this page, explore the history and timeline of Visual Snow Syndrome and the Visual Snow Initiative, highlighting key milestones in research, advocacy, recognition, and awareness.
Visual Snow (static vision) was first discovered and reported in the Transactions of the American Ophthalmological Society by Frank D. Carroll.
Visual Snow Syndrome (VSS) was discovered to be its own medical condition separate from migraine/migraine aura (without infarction) by Dr. Grant Liu.
Dr. Peter Goadsby, Dr. Christoph Schankin, and Dr. Francesca Puledda discovered Visual Snow Syndrome (VSS) is a neurological disorder that affects vision, sensory experiences, brain network processing, and more; it is not an issue with the structural integrity of the eyes nor does it entail vascular issues like migraine.
Dr. Peter Goadsby, Dr. Christoph Schankin, and Dr. Francesca Puledda proposed separate clinical criteria for Visual Snow Syndrome and asserted it was a distinct medical entity.
In 2018, Sierra Domb organized the first-ever Visual Snow Conference at University of California, San Francisco.
Sierra Domb founded the nonprofit organization, Visual Snow Initiative (VSI), and created the VSI Global Research Team consisting of researchers in 7 countries, including research pioneers Dr. Peter Goadsby, Dr. Christoph Schankin, Dr. Francesca Puledda, Dr. Owen White, Dr. Joanna Fielding, Dr. Victoria Pelak, Dr. Yasser Khan, and James Fulton.
Visual Snow Initiative (VSI) became the first organization to introduce and connect Visual Snow Syndrome experts globally, fostering collaboration among researchers who had not previously worked together. After researchers stated that progress was stagnant and funding was at risk, jeopardizing their ability to continue their studies, VSI reignited research efforts and maximized global collaboration to advance the understanding and study of the condition.
Visual Snow Initiative begins funding and working with researchers at academic institutions, including King’s College London, Monash University, and University of Colorado Denver.
Visual Snow Initiative establishes the Official Diagnostic Criteria for Visual Snow Syndrome.
Visual Snow Initiative established newfound awareness and media presence for Visual Snow Syndrome through continuous advocacy efforts, including sponsoring the Daytime Emmy Awards, creating public service announcements, awareness campaigns via social media, educational videos, and featured articles, news outlets, as well as partnerships with public figures, publications, and medical professionals to highlight the condition.
The Visual Snow Initiative (VSI) developed the world’s first doctor directory for Visual Snow Syndrome (VSS) in 2019 in response to the difficulty many patients faced in finding knowledgeable Visual Snow Syndrome doctors. This initiative provided a new global resource for individuals with Visual Snow Syndrome seeking medical professionals experienced in understanding and/or managing the condition.
First Global Directory of Visual Snow Doctors and Specialists.
Visual Snow Initiative funded studies focusing on the pathophysiology and neurological underpinnings of Visual Snow Syndrome, including abnormal activity in the visual processing pathways of the brain and the condition’s relationship with migraine/migraine aura; Neuroimaging identified brain abnormalities that helped explain key features of the condition, including abnormal sensory processing, photophobia, and more.
Visual Snow Initiative launched the Visual Imagery Project (VIP), a resource developed as part of an online study that examined whether continuous exposure to dynamic visual stimuli could impact or alleviate symptoms of Visual Snow Syndrome. The Visual Imagery Project provided a foundational framework for future research into the neural mechanisms of Visual Snow, focusing on the role of motion-selective neurons, simulations, and dynamic images in shaping perception. The VIP was built upon research trials and patient reports suggesting its potential effectiveness, featuring a 21-day protocol.
Visual Snow Initiative began working with neuroscientists at Massachusetts Institute of Technology, led by Dr. Edward “Ed” Boyden.
Research funded by Visual Snow Initiative discovered the structural and functional footprint of Visual Snow Syndrome, revealing that the condition is a network disorder that extends beyond the visual system into multiple different parts of the brain.
Researchers discovered that Visual Snow Syndrome is not as rare as previously thought, revealing that symptoms of the neurological condition affects an estimated 2-3% of the global population.
Alongside Guy’s and St Thomas’ NHS Foundation Trust, Visual Snow Initiative funded Dr. Sui Wong’s Mindfulness-Based Cognitive Therapy (MBCT) research into modulating and rewiring dysfunctional networks in the brain that are associated Visual Snow Syndrome.
Supported by Visual Snow Initiative, the Monash University Research Team took groundbreaking first steps into defining a behavioral signature of Visual Snow Syndrome, identifying the brain areas involved, and processes affected.
Research funded by Visual Snow Initiative identifies first-ever demographic information, age prevalence, comorbidities, and further-refined symptomatology of Visual Snow Syndrome.
Visual Snow Initiative was contacted by people affected by Visual Snow Syndrome and medical professionals in 64 countries around the world.
Visual Snow Initiative funded research that proved that Visual Snow Syndrome is NOT a psychiatric disorder nor simply a manifestation of anxiety and/or depression, a longtime untrue and harmful misconception; instead, the distressing nature of these symptoms coupled with the majority of the medical community’s historic marginalization of VSS patients can induce or worsen anxiety and/or depression; research also reaffirms that Visual Snow Syndrome has both visual and non-visual symptoms (Dr. Owen White, Dr. Joanne Fielding, Fielding-White Group research team).
Visual Snow Initiative funded the first study to assess temporal changes in allocation of visuospatial attention in Visual Snow Syndrome, which provided a more refined saccadic behavioral profile of the condition that can be interrogated using sophisticated neuroimaging techniques; these findings evidenced that attention is impacted in VSS, manifesting in a distinct saccadic behavioral profile, and delayed onset of “Inhibition of Return”.
Visual Snow Initiative supported research vital to our understanding of the condition, which discovered patients with Visual Snow Syndrome present increased activation in a wide network of intrinsic brain areas that are key in the processing of complex sensory and cognitive states; Regional cerebral blood flow (rCBF) increases were independent of the presence of an external visual stimulus, suggesting that these abnormalities could be a causal factor of the neurological disorder.
Researchers Dr. Jenny Hepschke, Dr. Paul Martin, and Dr. Clare Fraser discovered that “short-wave sensitive (‘blue’) cone activation is an aggravating factor for symptoms, providing insights into how color modulation impacts VSS and the certain brain pathways that may be responsible for the condition’s pathogenesis.
Visual Snow Initiative was contacted by people affected by Visual Snow Syndrome and medical professionals in 71 countries around the world.
The advocacy work of Visual Snow Initiative resulted in the first-ever acknowledgement for Visual Snow Syndrome by renowned academic and medical institutions like Mayo Clinic and Johns Hopkins; they extended an invitation for Visual Snow Initiative to work with them, which. formed new collaborations.
“Development and persistence of patient-reported visual problems associated with serotonin reuptake inhibiting antidepressants” demonstrated that serotonin reuptake inhibiting antidepressants can produce a range of adverse effects on vision even after discontinuation of the drug, including Visual Snow Syndrome.
In an informative study funded by Visual Snow Initiative that significantly contributed to our understanding of Visual Snow Syndrome, researchers identified widespread changes in the microstructure of the gray matter in the brain, the most notable of these occurring in caudal regions including the occipital cortex.
Sierra Domb gave the first public speech and TEDx Talk about her journey with Visual Snow Syndrome (VSS), establishing Visual Snow Initiative, and facilitating progress in awareness, education, resources, and research for VSS.
Visual Snow Initiative hosted the VSI Virtual Summit and identified the first viable noninvasive methods and latest advancements to treat symptoms of Visual Snow Syndrome.
Visual Snow Initiative identified first noninvasive viable treatments proven to help Visual Snow Syndrome (VSS) symptoms identified in published clinical research (fMRI brain imaging, patient QOL reports, etc.); The newly-identified effective treatment modalities for VSS symptoms included Neuro-Optometric Rehabilitation Therapy (NORT) (research by Dr. Charles Shidlofsky, Dr. Terry Tsang, and Vanessa Mora) and Mindfulness-Based Cognitive Therapy (MBCT) (research by Dr. Sui Wong).
Visual Snow Initiative launched their new website designed by Mehrad Mazaheri with content from Sierra Domb and Vanessa Mora, offering first-ever accessible resources and new information about Visual Snow Syndrome for patients and medical professionals; new resources include the Visual Snow Patient Guide, Visual Snow Brochures (in multiple languages), a video library containing more than 500 educational videos produced by Visual Snow Initiative, and more.
Visual Snow Initiative-supported study discovered the first possible biomarkers of Visual Snow Syndrome: abnormal activity within the glutamate and serotonin networks in specific areas of the brain (Dr. Francesca Puledda and King’s College research team).
Visual Snow Initiative was contacted by people affected by Visual Snow Syndrome and medical professionals in 96 countries around the world.
Sierra Domb led an initiative and provided supporting testimony to secure Visual Snow Syndrome its own ICD code in the International Classification of Diseases (ICD-11) alongside Dr. Peter Goadsby and Dr. Owen White, who submitted the proposal.
Visual Snow Initiative and AnCan Foundation launch first Video Support Group for Visual Snow Syndrome.
Sierra Domb, CEO & Founder, announced Visual Snow Initiative funded the first collaborative study to identify an effective medication for Visual Snow Syndrome using knowledge from recent research that identified specific brain pathways implicated in the condition (Dr. Peter Goadsby, Dr. Christoph Schankin, Dr. Francesca Puledda).
Since Sierra Domb founded Visual Snow Initiative in 2018, the number of research and publications for Visual Snow Syndrome has quadrupled.
In 2024-2025, Sierra Domb, alongside Dr. Peter Goadsby and Dr. Owen White, led a groundbreaking initiative through the Visual Snow Initiative (VSI) that achieved a historic milestone: securing official ICD codes from the World Health Organization for both Visual Snow Syndrome (the neurological condition) and Visual Snow (the symptom of seeing static 24/7). This achievement marked the first time Visual Snow Syndrome was globally recognized within the medical and scientific communities.
In 2024-2025, Sierra Domb, Dr. Peter Goadsby, and Dr. Owen White secured ICD Codes for both Visual Snow Syndrome (condition) and Visual Snow (symptom) from the World Health Organization, a significant and historic milestone that helped solidify medical and scientific legitimacy for Visual Snow Syndrome on a global scale
Based on published research and fMRI brain imaging by Dr. Sui Wong, which substantiated the efficacy of MBCT for alleviating Visual Snow Syndrome symptoms, Visual Snow Initiative partnered with Oxford Mindfulness Foundation (Oxford University) and created an app to make MBCT for Visual Snow Syndrome free and globally-accessible
The Visual Snow Initiative (VSI) created the first Visual Snow Syndrome (VSS) Patient Guide, Professional Guide, and Multi-Language Brochures to help both patients and professionals.
Visual Snow Initiative (VSI) collaborated with Finnian-Charlton Jones to launch the Visual Snow Syndrome Simulator to help people experience and visualize what it is like to live with VSS. This helpful tool makes the condition easier to understand or explain to others, including friends, family, doctors, workplaces, and more.
Visual Snow Initiative launches VSI 4 Kids, the first resource designed specifically for children with Visual Snow Syndrome and parents, featuring kid-friendly language and a supportive community.
The Visual Snow Initiative (VSI) created the Visual Snow Syndrome (VSS) Map to highlight the widespread global impact of VSS, track its prevalence to aid epidemiological research, raise awareness, and remind those affected that they are not alone
The Visual Snow Initiative (VSI) emerged from a deeply personal and traumatic medical journey following the sudden onset of Visual Snow Syndrome (VSS) in its founder, Sierra Domb, and from her determination to turn that anguish into action, laying the foundation for progress and helping others affected by VSS worldwide. Sierra’s life changed suddenly at age 21: subtle visual disturbances earlier in the day escalated while driving, her vision briefly going black, and when it returned, the full spectrum of visual and non-visual VSS symptoms appeared. She became unable to drive, work, attend school, or manage daily life. What followed was a terrifying medical odyssey. Doctors could not explain her condition; tests came back “normal,” some dismissed her symptoms, and others warned of possible blindness or death without explanation. The challenges of adapting to new, debilitating visual and non-visual symptoms, combined with repeated disbelief and lack of support, profoundly affected her mental health, ultimately leading to post-traumatic stress disorder (PTSD).
Having managed Erythromelalgia and Autoimmune Dysregulation since childhood, Sierra found VSS unlike anything she had faced, a condition entirely lacking awareness, understanding, guidance, or resources. Desperate for answers, she discovered a research paper by Dr. Peter Goadsby that matched her symptoms and reached out to him, receiving a formal diagnosis. The clarity of a name revealed the enormity of the problem: despite reports in the U.S. dating back to 1944, VSS remained largely ignored, leaving millions of all ages marginalized, misdiagnosed, and mistreated.
In 2018, Sierra organized the first Visual Snow Conference at the University of California, San Francisco, bringing together people with VSS, their loved ones, and the world’s few VSS researchers. For many, it was the first time they could meet others with the condition and speak with doctors who believed them. Researchers, in turn, heard directly from patients. The impact was profound. Sierra initially intended to stop after the conference. Publicly sharing her health had been something she avoided since childhood, when bullying and struggles related to her preexisting medical conditions had made her wary. She felt unqualified and uncertain, overwhelmed by her new life with VSS and PTSD, and disillusioned by systems that had failed so many.
But the conference reaffirmed Sierra’s realization: millions of people of all ages worldwide were affected by VSS, yet the medical community had failed to recognize the condition’s scope and seriousness, causing devastating impacts. Researchers explained they had no funding, and without it, studies and the hope of advancing understanding, identifying treatments, or one day finding a cure could not exist. These experiences reinforced her fear that speaking openly about her health could invite cruelty and misunderstanding. Yet after her medical trauma, she realized that silence would not change the injustice facing millions with Visual Snow Syndrome who lacked care, recognition, or hope for progress. Transforming anguish into action became her path forward. For a community already profoundly affected by a condition ignored by the medical system, Sierra was determined to create a space that combined compassion, tangible resources, and science.
What began as a single event grew into the Visual Snow Initiative. Sierra created VSI in response to her own experiences and those of others suffering in isolation, aiming to lay the foundation for more patients to be believed, new resources to become accessible, science to advance, and a better future to become possible. With no nonprofit or neuroscience experience at the time, she learned as she went, trusting that even imperfect action could do more good than letting fear or uncertainty leave the VSS community without hope or progress.
Partnering with established organizations, larger medical institutions, and navigating traditional nonprofit frameworks presented challenges. Many had never heard of Visual Snow Syndrome or did not view it as a priority, initially dismissing its global impact, even those focused on neuroscience. Formal research approvals created additional hurdles because the medical system had not recognized VSS before VSI’s work. Navigating costly neuroscience research, ethics and safety approvals, regulatory processes, and fundraising for a condition not yet considered legitimate added further barriers. Despite this, VSI’s nimble structure allowed it to educate partners, build credibility, and demonstrate that even a small, determined team of friends and collaborators could advance research, resources, and recognition for VSS. These efforts laid the foundation for ongoing progress and highlighted the dedication, collaboration, and global impact of VSI’s community from its earliest days.
Since the Visual Snow Initiative’s (VSI) creation, awareness, education, resources, recognition, and research for Visual Snow Syndrome (VSS) have grown significantly. VSI helped transform a condition long dismissed and misunderstood into a medically legitimized neurological disorder with a steadily expanding scientific foundation. Working alongside advocates, patients, and researchers worldwide, VSI has driven historic progress in scientific research, infrastructure, global collaboration, clinical and patient resources, and institutional recognition.
The Visual Snow Initiative (VSI) did not begin with certainty, credentials, or resources. It began with resolve. Through collaboration, education, and persistence, VSI is working to change the trajectory of Visual Snow Syndrome and ensure that progress continues into the future. We are deeply grateful to every supporter, patient, loved one, advocate, researcher, and medical professional who has believed in our mission and stood up for the realities of VSS.
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.
Research funded by the VSI provided objective evidence that VSS is a neurological disorder, not a structural eye disease.
VSI directly introduced researchers to one another, enabling cross-institutional collaboration that had not previously existed.
VSI launched the first open-ended researcher contribution and data-sharing frameworks for VSS.
VSI established the first global Visual Snow Syndrome research team, connecting researchers across seven countries after years of stagnation in the field.
Visual Snow Syndrome was formally classified as a distinct neurological disorder, with official diagnostic criteria established through research supported by VSI.
VSI-backed research defined the pathophysiology and symptom profile of VSS, creating a clearer clinical framework.
VSI-funded research established VSS as an independent and distinct neurological condition, clinically differentiated from migraine aura and persistent migraine aura without infarction.
VSI sponsored major awareness events and advocated for recognition in medical literature and public-facing publications.
VSI featured weekly stories from individuals with VSS worldwide, increasing visibility, representation, and understanding.
VSI created the first global physician directory for VSS, improving patient access to informed care
Objective brain imaging studies supported by VSI revealed measurable neurobiological differences in individuals with VSS.
VSI produced thousands of educational videos, public service announcements, expert discussions, and patient-centered stories
VSI recorded the first global prevalence and demographic data for Visual Snow Syndrome.
VSI-funded studies demonstrated that VSS is not a psychiatric disorder, countering decades of misclassification and stigma.
VSI built a comprehensive website documenting all aspects of Visual Snow Syndrome, serving patients, clinicians, and researchers worldwide.
VSI organized large-scale, multi-channel global awareness campaigns to reduce stigma and misinformation.
VSI Founder Sierra Domb delivered the first TEDx Talk focused on Visual Snow Syndrome, transforming personal experience into global awareness and action.
VSI published the first comprehensive treatment resource for VSS, detailing pharmacological approaches, supplements, neuro-optometric rehabilitation therapy (NORT), mindfulness-based cognitive therapy (MBCT), chromatic filters, and evidence-based coping strategies.
VSI partnered with physicians to deliver global medical masterclasses, expanding access to knowledgeable care.
VSI funded long-term research programs, ensuring sustained scientific progress.
Major medical and academic institutions that once dismissed VSS now formally recognize the condition, following years of research and advocacy driven by VSI.
VSI helped identify and expand access to emerging treatment options, including global NORT certification, VSS education courses, and free MBCT access through established platforms.
VSI-supported research identified biomarkers associated with VSS, linked to abnormalities in glutamate and serotonin neurotransmission, with GABA potentially implicated.
Since VSI’s inception, scientific research output on Visual Snow Syndrome has more than quadrupled.
The Visual Snow Initiative developed the first patient guides and physician-facing medical guides dedicated to VSS.
Visual Snow Syndrome (the condition) and visual snow (the symptom) are now officially recognized by the World Health Organization, with dedicated ICD codes, following collaborative advocacy efforts by Sierra Domb and the VSI team.
VSI launched the first video-based peer support group for individuals with VSS in partnership with the AnCan Foundation.
VSI created VSI 4 Kids, the first dedicated pediatric resource for children, teens, and families affected by Visual Snow Syndrome.
The Visual Snow Initiative (VSI) created the first Visual Snow Syndrome (VSS) map to highlight the widespread global impact of VSS track its prevalence to aid in epidemiological research, raise awareness, and remind those affected they are not alone.
