Welcome!
My Name is .
Sierra Domb is a Visual Snow Syndrome (VSS) activist and trailblazer in neuroscience, philanthropy, and communication. Her nonprofit organization, Visual Snow Initiative, is dedicated to global awareness, education, resources, patient advocacy, treatment development, and research for VSS. Sierra’s full bio, credentials, and more can be found below.
About Sierra
Experience
Born in Miami, FL, Sierra Domb is a Cuban-American Visual Snow Syndrome (VSS) activist and the CEO & Founder of the nonprofit organization, Visual Snow Initiative.
She also has professional work experience as a Voice Actor in Los Angeles, CA, a Writer/Reporter and Photographer whose articles and photographs have been published in The Miami Herald, a Radio Host/DJ, and a TEDx Speaker.
Sierra works 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.
Sierra’s story has been featured in news/media outlets, such as Business Insider and CBS. She also produces educational and multimedia content about VSS.
Education
- University of Miami
Bachelor’s of Science in Communication Studies || Double-Minor: Motion Pictures, Theatre Arts || Magna Cum Laude
Specialties
- Behavioral Sciences
- Qualitative Data Analysis
- Communication (Health, Multicultural, Organizational, Nonverbal, Interpersonal)
- Philanthropy
- Medical Research
- Neuroscience
- Neuro-Ophthalmology
- Public Speaking
- Voice Acting
- Journalism
- Writing
- Reporting
- Photography
Founding VSI
After years of frightening medical testing and agonizing unknowns, Sierra discovered that she had Visual Snow Syndrome (VSS), a debilitating neurological disorder that affects an estimated 2-3% of the world’s population. But most of the medical community knew nothing about her condition. Like Sierra, countless people worldwide were being marginalized, misdiagnosed, and mistreated due to the medical community’s lack of acknowledgement and understanding regarding VSS. This had profound, devastating effects on their health and wellbeing. People with VSS were left isolated and traumatized after being dismissed by physicians, with no resources or hope.
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), a nonprofit dedicated to global awareness, education, resources, patient advocacy, treatment development, and research for VSS.
VSI’s activism, studies, and established legitimacy for the condition have been acknowledged by medical/scientific institutions and publications, such as WHO, Mayo Clinic, Cleveland Clinic, NIH, NIHR, NHS, Healthline, Frontiers in Neurology, Brain Communications, Annals of Neurology, Neurology (American Academy of Neurology), Journal of Neuro-Opthalmology, and PubMed.
VSI has also sponsored events, such as the Daytime Emmy Awards, and garnered support from public figures, such as The Beatles’ Ringo Starr.
Created VSS Global Research Team, 1st Diagnostic Criteria for VSS, 1st Global Directory of VSS Physicians, 1st Visual Snow Conference, physician-patient resources, clinical tools, hundreds of educational videos for healthcare professionals and patients, and newfound VSS awareness through multimedia content
Funded and supported VSS research that led to the clinical/scientific acceptance of VSS as a distinct, neurological condition (with both visual and non-visual symptoms), discoveries into the pathophysiology and biological basis of VSS, as well as the development of treatments where none existed
What is Visual Snow?
Transforming Anguish into Action
In her TEDx Talk, Sierra Domb shares her experience of starting a revolutionary research foundation. After she began experiencing symptoms of Visual Snow Syndrome, Sierra became a philanthropic pioneer, vowing to help those who suffer from the condition. Passionate about empowering others to overcome adversity, Sierra implemented innovative techniques to generate a positive impact in the lives of millions of people worldwide.
Sierra Domb | TEDxUMiami
Testimonials
"Almost single-handedly, the Visual Snow Initiative has educated Visual Snow Syndrome patients and helped them understand that they have a true disorder. Their team has played a pivotal role in bringing together Visual Snow patient groups with physicians and researchers from around the world."
Professor Owen White
"The recognition of Visual Snow, broadening education, and funding research would not have happened were it not for the Visual Snow Initiative. The condition is now being studied actively by a number of groups on several continents. Research would be idling in a backwater without VSI. Thank you to the Visual Snow Initiative for all you have done and continue to do."
Dr. Peter Goadsby
"Visual Snow Initiative is the key player dedicated to improving the well-being of individuals affected by visual snow syndrome. VSI is crucial in all aspects: raising awareness, promoting education, and – importantly – supporting and coordinating research. They were able to contact clinicians and initiate research. This resulted in the definition of criteria for visual snow syndrome that are now used all over the world and an enormous increase of our understanding of the underlying mechanisms."
Dr. Christoph Schankin
"The VSI has been instrumental in raising awareness and acceptance of Visual Snow Syndrome as a neurological condition, educating patients about their disorder, and kickstarting the efforts made by researchers to understand what underlies their myriad of visual and other sensory symptoms. The work initiated by VSI has ensured that physicians and ophthalmologists are now mindful of the constellation of symptoms that define the syndrome, ensuring that patients’ concerns are not dismissed and that patient resources are now available."
Professor Joanne Fielding
Articles & Features
Update on ICD Code for Visual Snow Syndrome: Next Phase, MSAC Voting
Sierra Domb: ICD Update for Visual Snow Syndrome, Proposal Status, & List of Advocates
Visual Snow Syndrome 101
Disco Face: The Hero Behind The Mask
Sierra Domb Answers Your Questions On Visual Snow Syndrome
New VSI-Supported Study Reveals Brain Chemicals, Glutamate & Serotonin, Are Different In People With Visual Snow Syndrome
Sierra Domb Shares
Sierra's Journey in Numbers
"Passionate about empowering others to overcome adversity, I strive to make the world a more accessible, educated, inclusive, and accommodating place for people of all ages affected by VSS. I'm so grateful to everyone who has supported the Visual Snow Initiative and my journey. Thank you!"
SIERRA DOMB
