Since founding the Visual Snow Initiative (VSI), Sierra Domb has helped transform the global landscape of Visual Snow Syndrome (VSS). What began as her personal determination to better understand a little-known and often misunderstood neurological condition evolved into an international effort that brought together patients, neurologists, researchers, and healthcare professionals with a shared goal: advancing research, awareness, education, resources, and ultimately effective treatments for VSS.
Recognizing that meaningful progress required collaboration between the scientific and patient communities, Sierra worked to connect leading experts from around the world, fostering relationships that encouraged multidisciplinary research and accelerated the exchange of knowledge. Through international conferences, research partnerships, educational initiatives, and ongoing collaboration, VSI created opportunities for specialists to meet, share discoveries, and work collectively to advance the field. Many of today’s leading VSS researchers first connected with Sierra and one another through these collaborative efforts, helping establish the strong international network that continues to drive progress today.
Over the years, these partnerships have contributed to major milestones for the VSS community, including expanded global research, increased clinical recognition, the development of educational resources for patients and medical professionals, and the inclusion of Visual Snow Syndrome in the International Classification of Diseases (ICD-11). Throughout this journey, Sierra remained committed to ensuring that patient experiences helped inform scientific discovery while supporting researchers in advancing their work.
The following reflections from neurologists and researchers who have worked alongside Sierra over the years highlight not only her dedication to advancing the field, but also the lasting impact that collaboration between the Visual Snow Initiative and the global scientific community has had on the understanding of Visual Snow Syndrome.
Dr. Peter Goadsby
Professor and Researcher, UCLA and King’s College London
“Sierra Domb, Visual Snow Syndrome and the Visual Snow Initiative:
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. 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.”
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. 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.”