Global awareness, education, recognition, resources, and research for Visual Snow Syndrome ποΈπ¨οΈπ§ #VisualSnowSyndrome
Joined January 2018
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Sierra Domb, Founder & CEO of the Visual Snow Initiative (VSI), was recently featured by The Mighty. In the article, Sierra shares more about #VisualSnowSyndrome (VSS) π§ , the mission behind VSI, and her personal medical journey living with
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π Lily was diagnosed with #VisualSnowSyndrome (VSS) at 15 years old, although she had been living with it for as long as she could remember. One of the biggest challenges Lily faced because of VSS was reading and writing. πβοΈ
π: visualsnowinitiative.org/warβ¦
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It is a short 5- to 8-minute quiz where users rank color preferences, read short passages on different colored backgrounds, and answer a few quick questions. The goal is to help people explore which background color may feel easier or more comfortable for them to read with.
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This project offers a simple way for people to better understand their own visual preferences and consider small adjustments that may make reading feel more manageable. π«
Check out Haunani in the following link:
haunani.co.uk/
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New research is offering further insight into the #brain activity patterns that may be involved in #VisualSnowSyndrome (VSS). π¬π§
π Learn more: visualsnowinitiative.org/resβ¦
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healthy controls and from people with migraine alone. While EEG and machine learning are not currently used to diagnose VSS in routine clinical care, these findings may help identify future brain signatures, improve diagnosis, and guide treatment #research. π‘
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At the Visual Snow Initiative, we remain committed to advancing research, increasing awareness, and supporting progress toward better diagnosis, treatments, and quality of life for those affected by VSS.
π Learn more through the following link:
visualsnowinitiative.org/resβ¦
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This is what driving with #VisualSnowSyndrome
Looks like πβοΈπ
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π The Visual Snow Initiative is proud to announce that we have received three 2026 Communicator Awards of Distinction for our work advancing global awareness, education, and understanding of #VisualSnowSyndrome.
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communication and awareness are central to our mission.
VSI was recognized for:
π Visual Snow Initiative Website
Award: General-Causes & Awareness, Distinction 2026
π’ Visual Snow Syndrome Awareness & Education Campaign
Award: Campaign-Non-Profit, Distinction 2026
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π₯ βWhat is Visual Snow Syndrome?β
Award: General-Causes & Awareness, Distinction 2026
We are deeply grateful to our team, community, patients, families, clinicians, researchers, supporters, and advocates who continue to help move this mission forward.
πvisualsnowinitiative.org/colβ¦
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improve diagnosis, patient care, and future treatment development. π¬π‘
At the #VisualSnowInitiative, we remain committed to advancing research, increasing awareness, and supporting progress toward better diagnosis, treatments, and quality of life for those affected by VSS.
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Researchers found that approximately 3.8% of adults surveyed met symptom-based criteria for #VSS, a prevalence rate consistent with findings reported in Europe πͺπΊ and the United Kingdom π¬π§.
The study also revealed that only 12.8% of participants were familiar with VSS,
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highlighting the continued need for greater awareness, recognition, and education among both the public and healthcare professionals.
By bringing research to previously understudied regions, this work helps strengthen our understanding of VSS and supports ongoing efforts to
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π New research from #SaudiArabia is expanding our global understanding of #VisualSnowSyndrome (VSS).
As one of the first large-scale studies of VSS in the #MiddleEast, this research adds important data to the growing international body of evidence on the condition.
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