Visual Snow Initiative

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Visual Snow Initiative

Global awareness, education, recognition, resources, and research for Visual Snow Syndrome 👁️🌨️🧠

04/09/2026

My name is Jérémie Greber, I am 36 years old, and I come from Switzerland. I am affected by VSS since the end of last year (2025).

At the end of 2025, I gradually started noticing those famous tiny dots, the visual snow, as well as halos around streetlights when driving or walking home at night. I thought it was temporary, just due to tiredness. A few days later, I was at a restaurant with my wife and child. I mentioned to my wife that the lighting in the establishment felt strange, as I felt a sensation like a veil in front of my eyes. That is when my wife and I began to worry. Returning home that evening, I went out onto the terrace; the streetlights still had halos, I could barely make out the neighbors’ house, and it looked like an old CRT television screen that had lost its signal. I did my first research and came across Visual Snow Syndrome, which I had never heard of before. In the following days, I noticed several more symptoms, such as flashes of light, vision distortions in broad daylight, light sensitivity, and others. It ended up leading to an emergency appointment with the doctor, who had no answers for me and sent me to the ophthalmologist. She reassured me that my eyes were fine, but made the diagnosis: VSS. She told me there is no cure, but had me undergo an MRI anyway, which came back normal.

Today, I try my best to live with it. There are days when it seems easy and I barely notice the symptoms, while other days are more filled with anxiety and depression. Knowing that this issue is likely to stay with me for the rest of my life makes it hard to stay positive at times. I find it difficult to talk about it with those around me, out of fear of not being taken seriously and due to a lack of understanding, as almost no one has heard of this syndrome.

Sharing one’s story will surely not revolutionize research and results, but every small step counts. I encourage everyone affected by the syndrome to do the same; it can do a lot of good. Continuing life surrounded by friends and family is what helps me the most to forget about health worries. Love will always remain the best medicine.

🔗: https://www.visualsnowinitiative.org/warriors-of-the-week/jeremie-greber/

03/09/2026

Saccades are the quick eye movements that help us shift our focus from one object to another, whether we’re reading, scanning a room or following movement.

Research suggests that people with Visual Snow Syndrome (VSS) may have more difficulty controlling these eye movements. Their eyes can be drawn toward distracting visual cues, even when they know where they are supposed to look, leading to more antisaccade errors.
These findings may reflect differences in how the brain filters and processes visual information, making it harder to ignore unnecessary stimuli and maintain focus.

👀 Saccadic training, used as part of Neuro-Optometric Rehabilitation Therapy (NORT), is designed to improve eye movement control, visual stability and focus.

Want to learn more about research-supported options for managing VSS symptoms, including noninvasive and pharmacological approaches?

🔗 Visit the “Treating Visual Snow” page at VisualSnowInitiative.org.

https://www.visualsnowinitiative.org/managing-vss/

01/09/2026

A meaningful step forward for the Visual Snow Syndrome community in Iran. 💙🇮🇷

The Rare Diseases Foundation of Iran has officially acknowledged Visual Snow Syndrome and shared an educational video explaining the condition and its symptoms.

This recognition is incredibly important for people living with VSS in Iran. Access to information, specialized resources and advocacy for lesser-known conditions can be limited, making it even more difficult for patients to find answers, feel understood and know where to turn for support.

Having an established rare disease organization in Iran bring attention to Visual Snow Syndrome helps increase awareness and understanding of the condition within the country, while letting those living with VSS know that they are seen and that their condition is being recognized.

Thank you to 🇮🇷 بنیاد بیماری های نادر ایران for helping bring greater awareness to Visual Snow Syndrome and for supporting those affected in Iran.

31/08/2026

🧠 New research is exploring the connection between Yayoi Kusama’s art and Visual Snow Syndrome.

In a 2026 paper published in Cureus, researchers Lana Liquard, Richard Ho and Enrique Carrazana looked at Kusama’s own descriptions of what she saw and compared them with her artwork. They found similarities with several visual symptoms, including visual snow, afterimages, light sensitivity, trouble seeing in the dark, and changes in how size and distance are perceived.

Kusama described experiencing “flashes of light, auras, or dense fields of dots” from childhood. She also recalled looking at a red flower pattern on a tablecloth and then seeing the same pattern continue across the room and her body.

Kusama was never formally diagnosed with Visual Snow Syndrome. But researchers used her experiences and artwork as visual examples of what certain neurological symptoms can look like.

Yayoi Kusama passed away earlier this month at the age of 97. This research adds another way to understand art, perception, and the different ways people can experience vision.

🔗 Read more and share your artwork inspired by Visual Snow Syndrome in the comments below! 🎨

https://www.visualsnowinitiative.org/research/yayoi-kusamas-world-of-dots-the-connection-to-visual-snow-syndrome/

28/08/2026

For many people living with Visual Snow Syndrome (VSS), one of the hardest parts is explaining what they actually see. 👁️

Persistent visual static, afterimages, trailing and light sensitivity happen within a person’s own visual field, making these symptoms difficult for family, friends and even healthcare professionals to fully understand.

Peter Szigeti began experiencing visual disturbances, migraines and significant light sensitivity in childhood, years before he knew there was a name for what he was seeing. After eventually discovering Visual Snow Syndrome and connecting with others in the VSS community, his own experience inspired him to find a better way to show others what he was seeing and ultimately create a tool to help people communicate their symptoms more clearly.

📱 The Visual Snow Simulator allows users to recreate and customize visual phenomena associated with VSS, including:
❄️ Visual static or snow
👁️ Afterimages
〰️ Trailing
💡 Light sensitivity effects

Each setting can be adjusted individually, helping users create a representation that more closely reflects their own visual experience.

Peter has also developed OpenVisual, a project exploring a more consistent way to describe visual symptoms numerically, and he is working toward a future virtual reality version of the simulator for education, awareness and research.
As Peter describes it, when he becomes deeply focused on creating something, the “snow melts away.” 💙

Learn more about Peter’s story and the Visual Snow Simulator below

https://www.visualsnowinitiative.org/awarness/new-visual-snow-simulator-app-developed-by-peter-szigeti/

The simulator is currently available on iOS, Android and through a browser-based version.

27/08/2026

.neurologist has created a video sharing 5 nutrition tips for people living with (VSS) 🥗💙.

Her tips include:
Blood sugar balance
Reducing ultra-processed foods
Choosing magnesium-rich foods
Eating colorful vegetables
Staying hydrated

While there is currently no specific diet proven to treat VSS, healthy nutrition can help support overall health and well-being. 🧠

Watch the full video to hear Dr. Wong explain each tip and learn more!

🔗 https://youtu.be/acQGzMHa5u0?si=iMrxD_gwLOZ446JO

25/08/2026

I was born with this neurological issue. I am 62 years old, and throughout my lifetime, I have told doctors that I see flickering dots of colored light. I was always told it was normal or that what I was seeing was simply floaters. Yes, I see floaters…but what about the trillions of tiny dots of light that are constantly dancing around? I could never get an answer.

I have one daughter and one son who were born with it, and I now have two grandchildren who were also born with it.

I have never seen complete darkness. Nighttime is the absolute worst. When you close your eyes, you are met with a never-ending light show. Finding your way in the dark with all those dots of light is incredibly difficult.

The ringing in my ears has been there for as long as I can remember, and it has gotten increasingly louder with age. I also have a heart issue where my heart can stop for up to five seconds. During those moments, I experience the most peaceful silence I have ever imagined. The ringing suddenly stops until my heart starts again. It is the only time in my life that everything is completely quiet.

It would be amazing to see clearly without the constant light show. More than anything, I would love for my children and grandchildren to experience clear vision.

I did not know what this condition was called, or that so many other people experienced visual snow, until September 4, 2023. That night, I asked my then-wife if she could see the ceiling fan turning. She said, “Of course. Why?” I told her, “Because I can’t see it clearly because of the light show.” She started researching what I was describing, and that is how I finally discovered the name for what I had been experiencing my entire life.

I planned to ask my only sister the next morning if she had ever experienced the same thing. Sadly, she passed away at 4:00 a.m. that very night, so I never got the chance to ask her. None of her children seem to understand what I am describing, so I assume they do not experience it.

That is part of my story, I guess.

🔗 Read more: https://www.visualsnowinitiative.org/warriors-of-the-week/gregory-dana-peters/

24/08/2026

The Visual Snow Initiative and our Founder Emeritus, Sierra Domb, were recently featured by CNBC Cures, bringing Visual Snow Syndrome (VSS) and the power of patient-led advocacy to a major national platform dedicated to rare diseases.

In the August 21, 2026 edition of the CNBC Cures newsletter, Sierra shared her journey from developing debilitating and unexplained visual and sensory symptoms to finally receiving a diagnosis of Visual Snow Syndrome and ultimately founding the Visual Snow Initiative.

Her story highlights an important reality for people living with underrecognized conditions: patients can play a powerful role in advancing awareness, research and medical recognition.

Launched by CNBC in 2026, CNBC Cures brings together patients, families, researchers, physicians, biotechnology leaders, investors, policymakers and regulators to spotlight rare diseases and help accelerate progress toward better research, treatments and outcomes.

For the VSS community, this feature represents another meaningful step toward bringing Visual Snow Syndrome into broader conversations in medicine, research and healthcare.

A heartfelt thank you to CNBC Cures and Brad Quick for sharing Sierra’s story and helping raise much-needed awareness of Visual Snow Syndrome. We are incredibly grateful for the opportunity to help more people around the world learn about VSS. 💙

Read more: https://www.visualsnowinitiative.org/collaboration/visual-snow-initiative-and-founder-emeritus-sierra-domb-featured-in-cnbc-cures/

21/08/2026

🧠 Researchers wanted to know whether lumbar punctures and cerebrospinal fluid (CSF) testing could help identify underlying causes of Visual Snow Syndrome (VSS).

A new study published in Cephalalgia, featuring VSI collaborators Dr. Antonia Klein, Dr. Christoph J. Schankin and colleagues at Inselspital, Bern University Hospital, explored this question.

🔬 Researchers compared CSF findings from 36 people with VSS and 31 controls. Overall, they found no significant differences in CSF cell counts or protein levels between the two groups. They also found no evidence of the autoimmune encephalitis or paraneoplastic neurological antibodies they tested for.

⚠️ A small number of people did have abnormal CSF findings, but these were generally accompanied by other neurological “red flags,” such as unusual or severe headaches, new neurological symptoms, visual snow that was stronger in one area of the visual field, or abnormal MRI findings.

The findings suggest that lumbar punctures may not need to be part of routine testing for people with VSS, particularly when neurological and ophthalmological exams and brain imaging are normal.

🩺 However, when visual snow is accompanied by atypical symptoms or other neurological warning signs, further testing may still be helpful in investigating a possible secondary cause.

📚 While larger studies are needed, this research supports a more targeted and individualized approach to evaluating Visual Snow Syndrome.

🔗 Learn more via the following link:
https://www.visualsnowinitiative.org/research/new-study-examines-whether-lumbar-punctures-are-necessary-in-visual-snow-syndrome/

20/08/2026

🧠 Do you live with Visual Snow Syndrome (VSS) and live in Australia?

Researchers from the University of Western Australia and the Lions Eye Institute are inviting people across Australia with lived experience of Visual Snow Syndrome (VSS) to take part in an online Micro Community Conversation.

💻 This conversation will take place entirely online, so you can participate from anywhere in Australia.

💙 This is an opportunity to share your experiences and help guide future research into .

Researchers hope to better understand:
✨ Which visual symptoms have the greatest impact
👁️ Which everyday visual tasks are most challenging
🔬 What people living with VSS would like researchers to focus on
🌍 How future vision research can better support the VSS community

Who can participate?
✅ Diagnosed with Visual Snow Syndrome (VSS)
✅ 18 years of age or older
✅ Currently living anywhere in Australia
✅ Able to participate in the conversation online

🎁 Participants selected to take part will receive an $80 gift card!

🔗 Find out more and submit your Expression of Interest below!

https://cciprogram.org/opportunities/visual-snow-syndrome/

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