OUR MISSION
The Visual Snow Initiative (VSI) is a nonprofit organization dedicated to global awareness, education, resources, patient advocacy, treatment development, and research for Visual Snow Syndrome (VSS).
After organizing the first Visual Snow Conference, Sierra Domb founded the Visual Snow Initiative in 2018. Every day since then, our team has worked diligently to facilitate collaborations between physicians and academic institutions, develop solutions alongside researchers, make neuroscience more palatable for everyone regardless of age or health literacy, and help people affected by VSS worldwide.
We strive to make the world a more accessible, educated, inclusive, and accommodating place for people of all ages affected by Visual Snow Syndrome.
VSI developed the first Diagnostic Criteria for VSS, created the first Global Directory of VSS Physicians, established newfound awareness for VSS through multimedia content, funded critical research in 7 different countries that garnered clinical and scientific acceptance for VSS, and helped develop treatments where none existed.
Our team consists of passionate VSS experts, physicians, scientists, and researchers from around the world who are dedicated to creating and finding solutions. Their fields of expertise include neurology, neuro-ophthalmology, ophthalmology, optometry neuroscience, neurobiology, and advanced technology.
With your generous contribution, we gain the ability to collaborate on a global scale and continue to produce new research and treatments that can help those suffering from VSS.
Our Collaborators
Some of the institutions we have worked with and continue to work with include but are not limited to:
Massachusetts Institute of Technology
Monash University
Moorfields Eye Hospital NHS Foundation Trust
University of Bern
King’s College
University of California, Los Angeles
University of Colorado
Imperial College
McGill University / Université McGill
NIHR National Institute for Health and Care Research
Binghamton University
Origin of the Visual Snow Initiative
The Visual Snow Initiative (VSI) was founded by Sierra Domb, who struggled, as many did, with the lack of information and resources available to those with Visual Snow Syndrome (VSS). It was difficult for VSS patients to understand their condition and for physicians to help them. Sierra realized that further awareness, education, research, and solutions for VSS were necessary in order to reduce the high frequency of intrusive and unnecessary medical testing, marginalization, misdiagnosis, trauma, and isolation that many people with VSS endure (but should not have to).
Global Cause
We have heard from people affected by VSS in over 93 countries. Our team collaborates with international VSS experts and connects them to maximize global research efforts. By working together to raise awareness, we can generate interest and funding.
Finding Solutions
Our team is committed to developing resources and treatment options to help patients with symptom management. We also create diagnostic tools and clinical guides for effective physician-patient communication.
Medical Professional Testimonials
The Visual Snow Conference
Sierra Domb experienced the onset of Visual Snow Syndrome (VSS), a debilitating neurological disorder, in 2015. Throughout her journey in seeking a correct diagnosis for her symptoms, Sierra encountered an alarming absence of recognition for her condition, as well as minimal resources available to help VSS patients. Once Sierra Domb realized that she was not alone and others with VSS worldwide had a similar experience of being misdiagnosed and marginalized, she founded the Visual Snow Initiative to help create solutions.
Organized by Sierra Domb and the Visual Snow Initiative team, one of their earliest efforts was the establishment of the first Visual Snow Conference in history. Held on May 5th, 2018, at UCSF, Sierra Domb and her team hosted a free summit that brought together patients, their families, and Visual Snow experts from around the world. Doctors, researchers, and scientists with knowledge of Visual Snow Syndrome flew in from Australia, Canada, England, and various cities in the United States. Alongside Sierra Domb, their words offered acknowledgement and validation to patients and their families. Everyone involved sought to raise awareness, share the current body of research, provide education, offer resources, and foster understanding for Visual Snow Syndrome.
