OUR MISSION
The Visual Snow Initiative is a nonprofit organization dedicated to global awareness, education, resources, patient advocacy, treatment development, and research for Visual Snow Syndrome.
After experiencing the onset of a debilitating neurological disorder called Visual Snow Syndrome, or VSS, Sierra Domb endured marginalization and mistreatment on behalf of the medical community, who knew nothing about her condition.
Vowing to find solutions and help others with VSS who faced similar struggles, in 2018, she organized the first Visual Snow Conference and founded the Visual Snow Initiative (VSI). Every day since then, the VSI 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 individuals affected by VSS worldwide.
As we work towards a cure, we also strive to make the world a more accessible, educated, inclusive, and supportive place for people of all ages affected by Visual Snow Syndrome.
VSI funded critical research in 7 different countries that led to the clinical, scientific acceptance of VSS as a distinct, neurological condition (with both visual and non-visual symptoms), discoveries regarding the biological basis and pathophysiology of VSS, as well as the development of treatments for VSS symptoms where none existed. VSI also developed the first Diagnostic Criteria for VSS, created the first Global Directory of VSS Physicians, produced hundreds of educational videos about VSS for healthcare professionals and patients, established newfound awareness for VSS through multimedia content, and created physician-patient resources to improve health literacy, communication, and education regarding VSS.
Our team consists of experienced and passionate VSS experts, physicians, scientists, and researchers from around the world who are dedicated to finding solutions. Their areas of exploration include symptomatology, pathophysiology, brain network mechanisms, neurotransmitters, biomarkers, and treatments. Their fields of expertise include neurology, neuro-ophthalmology, ophthalmology, optometry, neuroscience, neurobiology, and advanced technology.
All donations to the Visual Snow Initiative go directly to Visual Snow Syndrome research.
Our Collaborators
Some of the institutions we have worked with and continue to work with include:
Massachusetts Institute of Technology
Monash University
Moorfields Eye Hospital NHS Foundation Trust
University of Bern
King’s College
NIH (National Institutes of Health)
Current Opinion in Neurology
University of California, Los Angeles
University of Colorado
Imperial College
McGill University / Université McGill
NIHR National Institute for Health and Care Research
Binghamton University
Patient Worthy: Rare Patient News. Well Done.
University of Queensland
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 Awareness & Research
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 for VSS studies.
Creating & Finding Solutions
Our team is committed to producing scientific studies, viable treatment options, and helpful physician-patient resources, such as diagnostic tools, clinical guides, and additional content to boost education, health literacy, and VSS patient empowerment.
Medical Professional Testimonials
The Visual Snow Conference
Organized by Sierra Domb and the VSI 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 and her team hosted a free summit that brought together patients, their families, and VSS experts from around the world. Doctors, researchers, and scientists with knowledge of VSS flew in from Australia, Canada, England, and various cities in the United States. Alongside Sierra, 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 VSS.
Support Visual Snow Syndrome Research
All donations to the Visual Snow Initiative go directly to Visual Snow Syndrome (VSS) research.
Your tax-deductible contribution ensures that global research will continue and makes a positive difference in the lives of people affected by VSS.
