The Visual Snow Initiative (VSI) announces that Founder Sierra Domb has transitioned to the role of Founder Emeritus, along with updates regarding the future of the organization and the strategic measures implemented to ensure the continued advancement of research, education, awareness, and scientific understanding of Visual Snow Syndrome (VSS).
This update includes statements from VSI Founder Sierra Domb and Visual Snow Syndrome research pioneers Dr. Francesca Puledda, Dr. Owen White, Dr. Christoph Schankin, and Dr. Peter Goadsby, who were among the first physicians to scientifically validate Visual Snow Syndrome as a neurological condition. They have worked alongside Sierra through the Visual Snow Initiative’s global research collaborations since the Visual Snow Conference in 2018, which inspired the organization’s founding.
VSI Founder Moves from Leadership to Founder Emeritus
Sierra has been deeply involved in all aspects of VSI while managing co-occurring health conditions since childhood, including Autoimmune Dysregulation and Erythromelalgia, alongside VSS, which began in early adulthood. Following physically and emotionally demanding events, her autoimmune issues and chronic pain have significantly worsened, making it difficult to contribute at the full capacity she believes VSI and its supporters deserve.
As such, she has made the difficult decision to step back from leadership at the Visual Snow Initiative and transition to the role of Founder Emeritus, following the guidance of her medical team and the need to prioritize intensive medical care for ongoing autoimmune health issues and her overall well-being.
VSI’s Directors, including Director of Research Vanessa Mora, will continue leading the organization’s operations, scientific initiatives, and long-term strategy, building upon the strong research foundation Sierra Domb established over the past eight years after developing Visual Snow Syndrome at age 21 and founding VSI at 23. While leadership is changing, the Visual Snow Initiative’s mission remains unchanged: to accelerate research, expand education, increase awareness, and support the global scientific community in its work to improve treatments and, ultimately, discover a cure for Visual Snow Syndrome.
As VSI enters this next chapter, the organization remains committed to fostering collaboration among researchers, clinicians, patients, and advocates worldwide while building upon the progress achieved since its founding. This leadership transition reflects Sierra Domb’s vision while positioning the Visual Snow Initiative for continued scientific advancement and progress for the global Visual Snow Syndrome community.
VSI’s Directors, global research collaborators, individuals affected by VSS, and their loved ones will continue working together to advance research and understanding of Visual Snow Syndrome. From its inception, VSI was not built as an end in itself, but as a durable foundation for long-term progress. This structure ensures that research into Visual Snow Syndrome can continue without interruption, supporting ongoing discoveries, further treatment development, and the long-term pursuit of a cure. Sierra has also implemented measures to ensure that, regardless of her health or level of involvement, this work can continue, including:
Sustained Research Funding, Global Collaboration, and Expanding Research Directions:
Ongoing studies for Visual Snow Syndrome are currently underway, and new research into causes, genetics, neuromodulation, pharmacological testing, and broader interdisciplinary approaches has been funded, securing future findings for years to come so researchers can continue their work. VSI will continue supporting researchers in exploring new treatments, including pharmacological and noninvasive approaches, alongside ethical, regulatory, and clinical translation pathways necessary for potential future therapies. As always since its inception, all public donations to VSI will continue to be directed exclusively to VSS research. Sierra united VSS researchers globally to establish VSI’s Global Research Team in 2018, and all funds support their collaborative efforts in advancing understanding of the condition, improving care and treatment, and supporting researchers in their work toward a potential future cure. This global network of collaborators will continue sharing data and resources to maximize research impact worldwide and ensure continuity of discovery.
Academic Partnerships and Scientific Milestones
VSI’s longstanding partnership with King’s College London remains central to its research efforts, including work led by Francesca Puledda, with contributions from Peter Goadsby, Christoph Schankin, and Owen White. This collaboration builds on foundational milestones achieved under Sierra’s leadership, including the establishment of ICD codes for Visual Snow Syndrome and its hallmark symptom, Visual Snow. Working with VSI, King’s will continue to advance research into the mechanisms, clinical characterization, and treatment pathways of VSS, supporting sustained global progress in the field. In addition to King’s College London, VSI continues to collaborate with and support the global VSS research community and its ongoing studies, with a full list of diverse studies, principal investigators, and objectives available on the VSI website.
Access for Everyone to VSS Education, Resources, and Content
All of the Visual Snow Initiative’s original educational resources, tools, social media and newsletter content, and its comprehensive website remain publicly accessible, ensuring continued global access to information, support, and educational materials.
A Community Connected by VSS Experiences and a Continuing Mission
Everyone at VSI has a personal or professional connection to Visual Snow Syndrome. Whether they live with VSS, support someone affected by VSS, have a personal connection to the condition, or advance research, awareness, and care, each person is driven by a desire to help. Our collaborators are clinicians, researchers, and professionals who believe in our mission and share their expertise. VSI’s core team is made up of volunteers and members who self-fund VSI’s day-to-day operations and dedicate their time because they care about making a difference. As has been the case since VSI’s inception, 100% of the donations VSI receives continue to directly support VSS research, ensuring that every contribution helps advance ongoing discovery, further understanding, and future progress.
Reflections from Sierra Domb and VSS Researchers
Sierra Domb – Founder Emeritus, Visual Snow Initiative
“Stepping back from core operations for my health is one of the hardest decisions I’ve ever had to make. VSI has been my heart and soul for years, and I have poured everything I had into advocating for people with Visual Snow Syndrome, creating resources, and advancing research.
I have always tried my best to help and to keep going through medical challenges, but my doctors have made it clear that I now need to pause and address significant autoimmune issues. While navigating difficulties in life often builds resilience, it is also important to recognize limitations and be honest about what my body can and cannot sustain.
I have never felt fully qualified, even now. I just knew I wanted to try my best, and that without effort, I feared nothing would ever change for us. I did this to help even one person who may be struggling with the medical trauma associated with the condition and its marginalization, in the way I did at 21 when Visual Snow Syndrome was completely unrecognized and I had no answers, resources, or hope.
My goal through VSI has always been to help people affected by VSS and to advocate for patients of all ages globally, their loved ones, as well as the small group of unfunded researchers who recognized early on that the condition was real. There have been challenges along the way that tested my resilience in ways I did not anticipate. Despite positive intentions, I recognize that I was naive in certain respects. Some unexpected aspects that came with this work were deeply disheartening and, at times, difficult to navigate, though my resolve to create progress remained unchanged. But candidly, I am no longer able to operate at the capacity I once did, as autoimmune issues I have managed since childhood and throughout my time leading VSI have resurfaced and become a significant health concern.
Just as I encourage others to stay strong through difficult times, I also maintain that health, both physical and mental, should be met with the same priority and compassion we show others, especially for those facing medical or other circumstances where self-care is essential for survival and wellbeing. I’ve also shared that I believe things are nuanced and multifaceted. Two things can often be true at once. We can accept our circumstances and still be heartbroken by the harsh reality of them, and that is true for me in this case.
But despite what the future may hold for me during this transition, I remain both logically confident and emotionally excited about the future of VSI under the leadership of the current team. It has been an honor to work alongside them and help build what we have created together over the years. They are a deeply passionate, dedicated group with a wide range of expertise, united by both professional commitment and personal connection to VSS. They thoughtfully integrate science and lived patient experience, and consistently bring compassion and action to their work in service of others. They are my friends and, in many ways, family. I am deeply grateful for their belief in my capabilities, even during times of uncertainty as I navigated physical and emotional pain, and for helping bring my conceptual ideas for VSI into reality while supporting my personal growth and learning along the way. They will continue to inspire me through their work, character, kindness, and their desire to create meaningful, positive change through VSI.
Now transitioning to Founder Emeritus, I take immense comfort knowing that the foundation we have built together, our resources, research, and collaborative network, can empower the next generation of patient advocates and scientists to continue progress for the VSS community. This transition opens a new chapter for sustained research collaborations, global impact, and continued advancements.
Importantly, I have put plans in place to ensure that VSS scientific studies can continue and that researchers’ efforts to better understand, treat, and potentially discover a cure for this condition are supported for years to come.
I’m deeply grateful to every supporter, patient, loved one, advocate, researcher, and medical professional who has believed in VSI and stood up for the realities of VSS. Thank you so much to everyone who offered kindness, compassion, and encouragement as I navigated my own health challenges while learning to lead a nonprofit for a complex neurological condition I have lived with since age 21. I’m proud of what we have created together. Thanks to your generosity and our collective efforts, the work we’ve started has already had a global impact and can continue to grow as the Visual Snow Initiative enters its next phase.”
Researcher Statements
Dr. Francesca Puledda – Researcher, King’s College London
“It has been an absolute pleasure to work with Sierra over the past eight years as the Founder and CEO of Visual Snow Initiative. From her start in this endeavour, I have witnessed firsthand the transformative impact of her work. Her advocacy has brought global attention to a condition that was once unknown and overlooked, and she has empowered scientists like me to pursue groundbreaking studies that would not have been possible otherwise.
Beyond research, Sierra has worked tirelessly to build a supportive community. I want to take this moment to acknowledge all that the Visual Snow Initiative has accomplished under Sierra’s leadership and reaffirm my commitment to continuing our close collaboration, working with the Visual Snow Initiative team as we continue dedicating our efforts to uncovering the mechanisms of Visual Snow Syndrome and developing effective treatments for patients worldwide.”
Professor Owen B. White & Professor Joanne Fielding – Co-Directors, Ocular Motor Research Laboratory, Monash University, Melbourne, Australia
“In 2015, Professor Joanne Fielding, my co-director of the Ocular Motor Research Laboratory at Monash University, and I commenced independent research to try and define the psychophysical and physiological parameters of Visual Snow Syndrome.
In 2018 we were invited to the inaugural meeting of the Visual Snow Conference, where we first met Sierra Domb, a young woman who organized this first-ever VSS conference and had a large personal stake in Visual Snow Syndrome.
The conference brought together a number of clinical and research people who believed in the syndrome as a true entity, together with a large number of patients, all of whom had suffered substantially, being at the more extreme end of the spectrum, who had largely felt invalidated and devalued by their involvement with the medical profession. That was the status of Visual Snow at that time.
Sierra Domb subsequently created the non-profit organization, Visual Snow Initiative (VSI). She grew the organization while literally growing herself. Under her guidance, the Visual Snow Initiative has become the de facto leading organization in the field internationally. It has provided a voice for patients worldwide. It has provided an information resource for patients and clinicians worldwide. It has brought patients and clinicians together where necessary and possible. It has promoted research and clinical facilities worldwide. It has been intimately and constructively involved in the validation of the clinical entity and, most impressively, has substantially modified the opinion of the bulk of medical practitioners in the Western world at least. VSI has fostered collaboration amongst the extant medical research groups and has encouraged many people into the field. VSI was foundationally involved in the registering of Visual Snow Syndrome and Visual Snow, the symptom, in the ICD-11 (International Classification of Diseases).
All of that is due to the hard work and organization by Sierra Domb. VSI is Sierra and Sierra has been VSI.”
Dr. Christoph Schankin – Prof. Dr. med., Neurologie FMH
“It was with regret that I had to hear that Sierra Domb is retiring from the position of President and Ambassador of the Visual Snow Initiative (VSI). Sierra founded the VSI and shaped this group like no one else.
With the VSI, Sierra Domb has succeeded in revolutionizing our understanding of the disease. On the one hand, she was able to raise awareness of this clinical picture and raise it to the circle of objectifiable neurological diseases. Among other things, Visual Snow Syndrome has been listed in the International Classification of Diseases. On the other hand, with private funds and donations, the VSI is the world’s most important supporter of serious and systematic research in this field.
As a result, there has been a significant increase in research activity in recent years, which has improved our understanding of Visual Snow Syndrome and thus made it possible to investigate therapies for the first time.
I would like to express my sincere gratitude to the Visual Snow Initiative and especially to the founder Sierra for committing to the understanding of this disorder, which has received little attention so far. We all aim and will continue to search for an effective therapy for VSS.
If this quest succeeds in the future, it will certainly be thanks to the great commitment of Sierra and her team.
I wish Sierra all the best for the future and thank her once again for her trust in my research and clinical dedication.”
Dr. Peter Goadsby – Professor and Researcher, UCLA and King’s College London
“When the history of Visual Snow Syndrome (VSS) is written there will be few brighter spots or names than Sierra Domb. Dedicated, enthusiastic, and passionate, she brought an energy to the cause as she set up the Visual Snow Initiative (www.visualsnowinitiative.org), which has propelled the area forward in a remarkable way.
VSS was certainly a wasteland of both research and interest when modern efforts began less than fifteen years ago. It is not so long ago that one can recall being regarded as wasting time and effort on the subject when talking about it in public (1). VSI, spear-headed by Sierra, came into a nascent scene and literally supercharged it. Rather than providing a jeremiad, meetings were organized, research funded, and information provided. Most of all, she provided support of a moral type for those of us in research and for those blighted by the problem; we are indebted.
A sufferer herself, those insights into the journey, the setbacks, the frustrations and the limitations VSS places on those with the problem provided direction and motivation that has helped us all move forward. Most recently getting behind and helping us with our discussions and presentations to the World Health Organisation that directly resulted in VSS coming of age and being accepted into the International Classification of Diseases. This is the first step of widespread acceptance since it can no longer be said the problem does not exist.
Sierra will be missed by all of us. Yet what has been started can never be suppressed or rolled-back. The enthusiasm provided a momentum that will not be quelled and the intellectual curiosity challenges that will burn on in research until this problem is solved and properly treated. Thank you seems insufficient; insufficient was never in Sierra’s vocabulary. Onward forward is your legacy, and so it shall be.”
Building a Global Foundation for Collaboration and Progress
The Visual Snow Initiative (VSI), founded in 2018 by Sierra Domb at age 23, is an international nonprofit advancing awareness, education, resources, and research for Visual Snow Syndrome (VSS). VSS is a neurological condition affecting an estimated 2-3% of the global population, impacting vision and sensory processing. Although “visual snow” was described in clinical reports in the U.S. as early as 1944, the condition has been long ignored by the medical community, dismissed as non-existent, misattributed to structural eye disease or psychiatric causes, and associated with widespread misdiagnosis, misinformation, and lack of mistreatment of patients worldwide.
Sierra created VSI to provide people of all ages with VSS, their loved ones, and medical professionals with access to vital, evidence-based resources that had not previously existed, grounded in scientific research and informed by lived patient experience, while establishing awareness and education that reflect the global diversity of VSS cases. VSI would also establish foundational research infrastructure to help legitimize VSS, deepen scientific understanding of the condition, and support the efforts of unfunded global researchers, including the exploration of etiology, biomarker identification, the involvement of neural systems across the brain, and the first treatment options for symptoms (both noninvasive and pharmacological), as well as researchers’ long-term work toward the discovery of a potential cure.
Reflected in VSI’s ethos, “Collaborate, Educate & Cure”, Sierra helped bridge longstanding gaps in the field by fostering multidisciplinary collaboration among VSS experts who had not previously communicated and connecting global researchers, clinicians, patients, and loved ones of those affected around a shared purpose of maximizing the potential for progress. Their teamwork helped catalyze international research, create a comprehensive library of VSS information, multimodal patient resources and clinical tools (available at visualsnowinitiative.org), and strengthen awareness and medical legitimacy for VSS. These efforts also led to its official recognition as a neuro-ophthalmological disorder with distinct diagnostic criteria, its inclusion in the World Health Organization (WHO) International Classification of Diseases (ICD-11), expanding acknowledgment by medical institutions worldwide that had initially denied the existence of VSS, and a fourfold increase in VSS studies since VSI’s founding, with publications in journals including Frontiers, Springer Nature, and Brain Communications, alongside growing inclusion in academic and medical literature.
From the entire Visual Snow Initiative team, thank you immensely for your belief in our mission, your support of our efforts, and your advocacy and dedication to progress for VSS. We are excited for what the community can accomplish together and what lies ahead.
Further detailed information and resources on Visual Snow Syndrome and the Visual Snow Initiative are available at: visualsnowinitiative.org