Visual Snow Initiative

26/06/2026

This part of my life is called “Visual Snow Syndrome”

25/06/2026

Sierra Domb, Founder of the Visual Snow Initiative (VSI), was recently featured by Shoutout Miami. In the interview, Sierra shares her journey navigating health challenges, overcoming obstacles, and building a mission-driven organization dedicated to helping others.

She reflects on how living with Visual Snow Syndrome and other medical conditions shaped her perspective, strengthened her resilience, and ultimately inspired her to establish the Visual Snow Initiative. What began as a search for answers evolved into a global effort to raise awareness, advance research, improve education, and support patients affected by VSS. 💙

Sierra also discusses the importance of perseverance, embracing individuality, and creating positive change despite adversity. Through VSI, she has worked alongside leading researchers, physicians, and organizations around the world to help drive progress for the Visual Snow Syndrome community. 🌎🔬

We're grateful to Shoutout Miami for helping share Sierra's story and highlighting the importance of patient advocacy, resilience, and the Visual Snow Initiative. 🤝

👉 Read the full feature through the following link:
🔗: https://www.visualsnowinitiative.org/awarness/sierra-domb-on-how-visual-snow-syndrome-inspired-her-advocacy-and-the-visual-snow-initiative-shoutout-miami/

23/06/2026

June is National Migraine Awareness Month. 💜🧠

Many people with Visual Snow Syndrome report having migraines, especially migraine with aura.

At the same time, migraine and Visual Snow Syndrome are two different neurological conditions. While they can occur together and may share overlapping features, VSS is recognized as a distinct condition with its own symptoms, diagnostic criteria, and impact.

Scientific research and advocacy have helped bring greater awareness to this distinction, improving understanding for patients, healthcare professionals, and the broader community. 🔬📚

Raising awareness matters because clearer recognition leads to better conversations, better support, and continued progress for people affected by VSS. 💙

🔗: https://www.tiktok.com/

22/06/2026

A new study is helping researchers better understand how Visual Snow Syndrome (VSS) may affect the way the brain interprets movement. 🔬🧠

Published in Investigative Ophthalmology & Visual Science, the research examined directional motion sensitivity and its connection to trailing-type palinopsia (TTP), a symptom where moving objects appear to leave behind ghost-like trails or repeated images.

Researchers found that people with VSS did not show reduced motion direction sensitivity overall. However, individuals with stronger visual trailing symptoms were more sensitive to the direction of movement.

These findings suggest that palinopsia may reflect measurable differences in how motion-related visual information is processed in the brain. While visual trailing can be disruptive, studying this symptom may help researchers better understand why VSS experiences can vary from person to person. 💡

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.

🔗 Learn more through the following link:

https://www.visualsnowinitiative.org/research/a-new-study-of-directional-motion-sensitivity-in-visual-snow-syndrome-and-its-association-with-trailing-type-palinopsia/

18/06/2026

The Visual Snow Initiative has donated $100,000 to support Visual Snow Syndrome research at King’s College London 🧠, where leading researchers Dr. Francesca Puledda, Dr. Peter Goadsby, and their clinical research team are conducting multifaceted studies into this complex neurological condition.

Their work uses advanced neurophysiology and neuropathology methods 🔬 to investigate the brain mechanisms underlying VSS and advance the development of targeted treatment options.

Research supported by VSI includes identifying biomarkers 🧬, studying neurophysiological signatures and migraine differences ⚡, exploring pharmacology and GABAergic mechanisms 💊, investigating genetic links, and examining visual paradigms and perceptual processing through the VISION Study 👁️.

Together, these aims support the broader goal of identifying the biological mechanisms behind VSS and advancing more targeted, evidence-based approaches to treatment.

Thank you, with our deepest and heartfelt gratitude, to all of VSI’s supporters whose generosity has made this donation and ongoing research possible. 💙

Please continue supporting and donating through our website so more Visual Snow Syndrome research can continue.

Read more about our $100,000 donation through the following link:

https://www.visualsnowinitiative.org/fundraising/visual-snow-initiative-donates-100000-to-visual-snow-syndrome-research-at-kings-college-london/

16/06/2026

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! 🩵

15/06/2026

Created by the Visual Snow Initiative (VSI), this interactive world map highlights the global impact of Visual Snow Syndrome (VSS), a neurological condition affecting vision, hearing, cognition, and quality of life.

Each pin represents a person with VSS, showing it affects people of all ages around the world. The map raises awareness, fosters connection, and reminds those affected they are not alone, while supporting prevalence tracking and epidemiological research. 🧠

How to Join the Map:
📍 Search for your city, country, or address
📍 Drop a pin on your location and adjust it if needed
📍 Add your name and age, or participate anonymously
📍 Submit your pin

Explore the Visual Snow Syndrome World Map via the following link:
https://visualsnowsyndrome.org/

12/06/2026

💙 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

11/06/2026

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.

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

10/06/2026

This is what driving with Visual Snow Syndrome
Looks like 🚗❄️🎆