Visual Snow Initiative

🌍🔬Since founding the Visual Snow Initiative (VSI), Sierra Domb has worked to bring together patients, neurologists, researchers, and healthcare professionals from around the world to advance research, education, resources, and progress toward effective treatments for Visual Snow Syndrome (VSS).

As Sierra transitions to her new role as Founder Emeritus, our latest article features reflections from Dr. Francesca Puledda, Researcher at King’s College London, and Dr. Peter Goadsby, Professor of Neurology and Researcher at UCLA and King’s College London, on Sierra’s advocacy, leadership, and the lasting impact of her work through the Visual Snow Initiative.

Their statements recognize how Sierra’s efforts helped build a global network of collaboration that has united researchers, accelerated scientific progress, expanded resources for the VSS community, and established a strong foundation for continued advancements in Visual Snow Syndrome research.

📖 Read the full article through the link below

https://www.visualsnowinitiative.org/research/sierra-domb-neurologists-discuss-her-impact-on-advancing-visual-snow-syndrome-research-awareness-and-resources/

Zykia Moore is a 36-year-old artist from Philadelphia, Pennsylvania, using her creativity to bring greater awareness to Visual Snow Syndrome (VSS). ❤️

After developing VSS following blunt force trauma in 2025, Zykia transformed her experience into an original work of art that captures the reality of living with this often misunderstood neurological condition. Through symbolic imagery, glitter, and textured elements, her painting represents many symptoms of VSS, including visual static, double vision, afterimages, tinnitus, migraines, insomnia, and other visual disturbances.

As part of her commitment to raising awareness, Zykia is donating 20% of the proceeds ($300) from the sale of her artwork to the Visual Snow Initiative (VSI). Her generosity will help support research, education, awareness, advocacy, and resources for the global VSS community.

Thank you, Zykia, for sharing your story and your passion for making a difference. 💙

If you’re interested in purchasing Zykia’s painting, please contact her directly at [email protected].

📚🧠 Visual Snow Syndrome is featured in Comprehensive Migraine Management, a medical textbook published by Springer Nature!

The dedicated chapter was written by Visual Snow Initiative (VSI) collaborator Dr. Francesca Puledda from the Headache Group, Institute of Psychiatry, Psychology & Neuroscience, King’s College London, UK. The chapter provides physicians and healthcare professionals with an up-to-date overview of Visual Snow Syndrome, including its symptoms, diagnosis, underlying neurological mechanisms, associated conditions, and current management approaches.

As Visual Snow Syndrome continues to be included in trusted medical textbooks, more clinicians can learn to recognize the condition, improve diagnostic accuracy, reduce misdiagnosis and marginalization, and provide better-informed care for people living with VSS. 💙

Every new educational resource is another important step toward advancing awareness, medical recognition, and understanding of Visual Snow Syndrome.

📑 Pages: 127-135
Read more below

https://www.visualsnowinitiative.org/research/visual-snow-syndrome-featured-in-comprehensive-migraine-management/

Today, we are sharing an important update regarding the future of the Visual Snow Initiative (VSI) and our continued commitment to advancing research, education, awareness, advocacy, and resources for Visual Snow Syndrome (VSS). 🧠

After years of leading VSI while navigating significant health challenges, our Founder, Sierra Domb, has made the difficult decision, following the guidance of her medical team, to transition to the role of Founder Emeritus so she can prioritize her health. Leadership of the organization will transition to VSI's Directors, who will continue advancing our mission and building upon the strong foundation Sierra established over the past eight years.

While this marks a new chapter, our mission remains exactly the same. We will continue working alongside researchers, clinicians, patients, and advocates around the world to accelerate research, expand education, increase awareness, improve care, and support the global pursuit of better treatments and, ultimately, a cure for VSS. 🌍🔬

Through this transition:
✨ Ongoing and future VSS research has been secured through continued funding.
🤝 Global scientific collaborations will continue to grow.
🏛️ Our longstanding partnerships, including King's College London, remain stronger than ever.
📚 All of our educational resources, tools, and patient information will continue to be freely available.
💙 As always, 100% of public donations to the Visual Snow Initiative continue to directly fund Visual Snow Syndrome research.

This announcement also includes heartfelt reflections from Sierra, along with messages from leading VSS researchers, including Dr. Francesca Puledda, Professor Peter Goadsby, Professor Owen White, Professor Joanne Fielding, and Dr. Christoph Schankin, who reflect on the progress achieved together and reaffirm their continued commitment to advancing research and improving the lives of those affected by VSS.

To our global community of patients, families, researchers, clinicians, advocates, and supporters: thank you. Your belief in our mission has helped transform the landscape of Visual Snow Syndrome research over the past eight years, and together we will continue driving meaningful progress for the VSS community. 💙

🔗 Read the full announcement via the following link 👇
https://www.visualsnowinitiative.org/research/vsi-founder-transitions-to-founder-emeritus-and-strengthens-the-framework-for-continued-visual-snow-syndrome-research-advocacy-resources/

With your generous support ❤️, the Visual Snow Initiative (VSI) continues to fund the groundbreaking research of Dr. Francesca Puledda (Principal Investigator), Dr. Peter Goadsby (Supervisor), and their team at King’s College London, Institute of Psychiatry, Psychology & Neuroscience 🏛️🔬. Their research is advancing the understanding of the underlying brain mechanisms of Visual Snow Syndrome (VSS) 🧠 and bringing us closer to future targeted treatments for this complex neurological condition.

King’s College London remains one of the world's leading centres for VSS research 🌍. This latest report highlights major progress, including completed neurophysiology data collection, the development of an ultra-high-field 7 Tesla MRI study, ongoing VISIONS research, genetic collaborations with TwinsUK, and continued expansion of the research team with PhD student Viviana Santoro and Research Assistant Samaksh Gupta 🎓🔬. Together, these innovative studies are helping uncover the biological mechanisms behind VSS and paving the way toward future pharmacological and neuromodulation therapies.

The report also celebrates Dr. Puledda's prestigious Medical Research Council (MRC) Clinician Scientist Fellowship 🏆, a significant milestone that will support five more years of transformative VSS research while expanding the team's capacity to accelerate scientific discovery.

📄 Learn more about VSI's continued support of this pioneering research in our latest King's College London Research Report.

https://www.visualsnowinitiative.org/collaboration/visual-snow-initiative-annual-report-2026-advancements-in-visual-snow-syndrome-research-at-kings-college-london/

Extraordinary Latinas is a book series that highlights the stories of Latina women creating impactful change through resilience, leadership, and lived experiences. 📖

Sierra Domb, Founder of the Visual Snow Initiative, contributed a chapter titled “Transforming Pain into Progress: A Life Shaped by Illness, Resilience, Inquiry, and Action,” dedicated to “all who suffer, feel different, unheard, or unseen, and to those who remain kind, offer support, take action, or try their best despite life’s hardships.”

In this chapter, Sierra shares her journey growing up with multiple chronic illnesses, experiencing bullying and medical dismissal, and later developing Visual Snow Syndrome (VSS), a neurological condition affecting millions worldwide that has long been overlooked. These challenges ultimately catalyzed the creation of the Visual Snow Initiative (VSI), where Sierra transformed her experiences into action by helping advance research, global collaboration, education, resources, and recognition for the condition. 🌎🧠

Her story reflects resilience, authenticity, and finding purpose through adversity. It conveys that strength is not the absence of struggle, but the courage to adapt, honor our needs, and trying our best despite the odds.

Thank you to United Latinas for creating a platform that uplifts inspiring stories and celebrates the voices of Latina women. 💜

Sierra’s full chapter, including the personal experiences that inspired the creation of VSI, is available to read online through the link below:

https://www.visualsnowinitiative.org/collaboration/sierra-domb-extraordinary-latinas-book-chapter-transforming-pain-into-progress-a-life-shaped-by-illness-resilience-inquiry-and-action/

📚 Visual Snow Syndrome is now featured in Otoneurology and Vestibular Medicine: A Clinical Handbook, published by Springer Nature!

The dedicated VSS chapter (pages 541-547) helps bring greater medical recognition, awareness, and education to healthcare professionals around the world. 🧠

As more trusted medical textbooks include Visual Snow Syndrome, more physicians can learn to recognize its symptoms, improve diagnostic accuracy, reduce misdiagnosis and marginalization, and better support people living with VSS. 💙

Every new educational resource is another step toward advancing understanding, improving care, and increasing awareness of Visual Snow Syndrome.

🔬 King’s College London Seeks Volunteers for Visual Snow Syndrome Study!

Researchers at King’s College London are recruiting adults aged 18+ with and without Visual Snow Syndrome (VSS) for the VISIONS Study (Visual Snow Investigation of Noise in Sensory Processing).

Eligibility also includes:
✅ Able to provide informed consent in English
✅ Able to attend one in-person study visit at King’s College London in London, UK
✅ Willing and able to complete the study procedures

The visit will last approx 90 minutes and will include computer-based visual tasks, questionnaires, and assessments related to visual imagery and synaesthesia. Participants with VSS will also use an augmented reality simulation to recreate their visual snow symptoms.

Participation will help researchers better understand how the brain processes visual information in VSS and may support the development of future treatments. 💙

💷 Participants will receive £25 as a thank-you for their time, a small reward for making a big difference in advancing research!

📧 Contact: [email protected]

https://www.visualsnowinitiative.org/research/kings-college-london-visions-study-visual-snow-research/

Researchers at the University of Siena in Italy studied whether repetitive transcranial magnetic stimulation (rTMS), a non-invasive technique that uses magnetic pulses to influence activity in targeted areas of the brain, could help reduce VSS symptoms.

👩‍⚕️ The case report involved an 18-year-old woman with Visual Snow Syndrome who received 10 sessions of low-frequency rTMS targeting the superior parietal lobule, a brain region involved in visual processing and sensory integration.

Following treatment, she reported an improvement in her symptoms. 🧬 Brain imaging and EEG recordings also showed measurable changes in brain activity, including reduced communication between visual processing regions, decreased gamma-band activity, and changes consistent with reduced cortical hyperexcitability.

🔬 While this research involved only one patient, it adds to the growing body of evidence exploring how non-invasive brain stimulation may influence the neurological activity associated with VSS.

https://www.visualsnowinitiative.org/research/a-new-case-report-repetitive-transcranial-magnetic-stimulation-for-visual-snow-syndrome-symptoms-relief-and-changes-in-brain-dynamics/

❓What ICD-10 codes are used for Visual Snow Syndrome in regions where ICD-11 is not yet implemented?

As more countries transition to ICD-11, it will become the global standard for documenting and classifying Visual Snow Syndrome (VSS). However, many healthcare systems still use ICD-10.
In these regions, healthcare providers may use codes such as H53.8, H53.9, or H53.19 to document Visual Snow Syndrome. While these codes do not fully capture the condition or all of its visual and non-visual symptoms, they may help support clinical documentation, patient care, and access to certain healthcare resources until ICD-11 is more widely adopted.

📖 Learn more about ICD codes for both Visual Snow Syndrome (the condition) and Visual Snow (the symptom) on our Visual Snow ICD Codes page.

🔗: https://www.visualsnowinitiative.org/visual-snow-icd-codes/