Visual Snow Initiative

Join us TODAY for our Visual Snow Syndrome Support Group @ 2:00 PM (EST)! 💬

📅 Don’t forget to mark your calendar for future sessions:
Every first Wednesday of the month at 8:00 PM EST
Every third Tuesday of the month at 2:00 PM EST

This peer-moderated virtual group provides supportive face-to-face conversations, friendly and relatable connections, emotional encouragement, and a safe space to share experiences. (Note: This group is not for medical advice. Please follow the guidelines.)

👉 Join using the link in our bio or visit: ancan.org/visual-snow-syndrome
We hope to see you there! 🩵

💙 Lily was diagnosed with Visual Snow Syndrome (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. 📖✍️

Intense contrast glare, especially black text on white backgrounds, made it difficult for her to process text comfortably. Over time, she found that printing on blue paper helped, especially during her exams, but as she got older, this became increasingly impractical.

🌈 That is how Haunani came to life.

Haunani is a free interactive resource created in collaboration with the Visual Snow Initiative. It is designed to support people with VSS, dyslexia, contrast sensitivity, or anyone who finds it difficult to read.

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.

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.

https://www.haunani.co.uk

New research is offering further insight into the brain activity patterns that may be involved in Visual Snow Syndrome (VSS). 🔬🧠

Published in The Journal of Headache and Pain, the study examined resting brain activity in people with VSS using electroencephalography, commonly known as EEG. Researchers found altered brain rhythms, including increased lower-frequency activity in delta, theta, and alpha bands. These changes were seen across several brain regions involved in visual processing, attention, sensory integration, and higher-level regulation.

The findings also suggest that VSS may involve more than the primary visual areas of the brain. Changes were observed across wider networks, including parietal, occipital, frontal, and sensorimotor regions, which may influence how visual information is processed and filtered. 📺🧠

The study also used machine learning models to examine whether EEG patterns could help distinguish people with VSS from 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. 💡

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.

Unmasking the noise: aberrant cortical oscillations in visual snow syndrome | Visual Snow Initiative Visual Snow Syndrome (VSS) is often difficult to explain because its symptoms are persistent, complex, and not always visible to others. Many people with VSS

🏆 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 Visual Snow Syndrome.

The Communicator Awards are a prestigious international awards program that recognizes excellence, effectiveness, and innovation across communication, marketing, and creative work. For VSI, this recognition is especially meaningful because communication and awareness are central to our mission.

VSI was recognized for:
🌐 Visual Snow Initiative Website
Award: General-Causes & Awareness, Distinction 2026

📢 Visual Snow Syndrome Awareness & Education Campaign
Award: Campaign-Non-Profit, Distinction 2026

🎥 “What is Visual Snow Syndrome?”
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.

Visual Snow Initiative Receives Three 2026 Communicator Awards of Distinction | Visual Snow Initiative The Visual Snow Initiative (VSI) is proud to announce that we have received three 2026 Communicator Awards of Distinction for our work advancing global

🌍 New research from Saudi Arabia is expanding our global understanding of Visual Snow Syndrome (VSS).

As one of the first large-scale studies of VSS in the Middle East, this research adds important data to the growing international body of evidence on the condition. Researchers found that approximately 3.8% of adults surveyed met symptom-based criteria for VSS, a prevalence rate consistent with findings reported in Europe 🇪🇺 and the United Kingdom 🇬🇧.

The study also revealed that only 12.8% of participants were familiar with VSS, 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 improve diagnosis, patient care, and future treatment development. 🔬💡

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.

New Study Finds Visual Snow Syndrome Prevalence in Saudi Arabia is Similar to Other Countries | Visual Snow Initiative A new study has found that Visual Snow Syndrome (VSS) affects approximately 3.8% of adults in Saudi Arabia, a prevalence rate that closely mirrors findings

Hi! My name is Maksim Khodych, and I’m 17 years old.

My life with Visual Snow Syndrome began after a vacation, when a persistent migraine lasted for two weeks without relief. Daily stress was already high. I was constantly pushing myself to study hard and build a good future, dreaming of becoming an engineer, but everything changed in an instant.

At first, no one believed I had a serious problem. I visited an optometrist and got glasses for mild astigmatism, thinking they would fix my vision, but they didn’t help. German doctors initially dismissed my condition, saying it was “not a migraine at all.” Then derealization hit, and one day I woke up with the full range of symptoms: palinopsia (afterimages), flickering and shimmering vision, constant visual trembling and shaking (oscillopsia), and from that moment on, I have been tortured by them nonstop.

Neurologists misdiagnosed me with migraine with aura, which I never had, only constant pain and visual disturbances. Everyday life feels unbearable, especially studying, which was my biggest goal and passion. As a Ukrainian who fled the war, my nervous system was already fragile due to trauma, isolation, and health issues such as childhood asthma and allergies. Now, living in Duisburg, Germany, my main distraction is watching football. I’m a huge fan, and it brings me brief moments of peace.

I am currently waiting for a response from a neurologist in Frankfurt regarding a proper VSS diagnosis and treatment, and I hope she will be able to help.

To everyone living with VSS: you are not alone in this struggle. War-related trauma may have made my condition worse, but we must keep going through the darkest days. Football matches, small daily routines, and even one doctor who truly listens can become lifelines. I wish all of you clearer vision, less pain, and moments of joy amid the noise. Keep fighting. We will get through this together.

Share your story: https://vsikids.org/share/

Living with Visual Snow Syndrome can be difficult to explain, especially to people who have never experienced it. 💙 The Visual Snow Initiative shares advice and resources to help make those conversations easier.

Here are eight ways to help others better understand what living with VSS is really like:
1️⃣ Direct others to the Visual Snow Initiative website to learn about VSS symptoms, diagnosis, current research, and the latest treatment developments.
2️⃣ Share our YouTube channel and encourage others to explore the VSS Simulator to experience common symptoms firsthand.
3️⃣ Share social media content, such as VSI’s TikTok, Instagram, and community stories, to help illustrate what living with VSS is like through real patient experiences.
4️⃣ Use familiar comparisons and analogies. Compare visual snow to TV static, snowfall, heavy rainfall, or swarms of tiny moving dots to make symptoms easier to understand.
5️⃣ Help others understand that VSS can include a variety of visual and non-visual symptoms, not just visual snow.
6️⃣ Share that VSS is a recognized neurological condition and is included in the World Health Organization’s ICD-11.
7️⃣ Share resources for children and families. VSI 4 Kids provides age-appropriate educational materials for children, parents, caregivers, and teachers.
8️⃣ Be patient with the process. Many people have never heard of VSS before, and understanding often takes time, many conversations and education.

Whether through articles, visual simulations, personal stories, or everyday conversations, each of these approaches can help build greater awareness, understanding, and support for the VSS community.

🔗:https://www.visualsnowinitiative.org/awarness/how-can-i-explain-visual-snow-syndrome-to-my-friends-and-family/