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Sierra Domb is a global health innovator, research collaborator, and consultant in intercultural and scientific communication. She has advanced humanitarian initiatives for marginalized medical conditions by fostering interdisciplinary collaboration, building research infrastructure, and creating accessible, multiformat medical resources. Her efforts have facilitated recognition, studies, and nuanced problem-solving for overlooked issues, promoting more equitable knowledge dissemination. Sierra has also united international researchers, clinicians, and institutions to establish new pathways for addressing systemic challenges across medical, cultural, social, and institutional contexts that had previously lacked effective frameworks. Sierra founded the Visual Snow Initiative and has served on the International Advisory Board for the Columbia-WHO Center for Global Mental Health. She was a TEDx speaker, a 2024 UMiami “30 Under 30” Award recipient, and contributed as an author and collaborator at Oxford Mindfulness.
Sierra’s full bio and credentials are provided below, and her work is featured throughout the website.
About Sierra Domb
Professional Experience
Born in Miami, FL, Sierra Domb is a proponent of science-informed progress, embracing an evolving multifaceted identity, and fostering personal resilience. Sierra founded the Visual Snow Initiative and has served on the International Advisory Board for the Columbia-WHO Center for Global Mental Health. She was a TEDx speaker, a 2024 UMiami “30 Under 30” Award recipient, and contributed as an author and collaborator at Oxford Mindfulness.
Her work has integrated academic training and professional experience in health communication, behavioral sciences, qualitative data analysis, and neuroscience with lived insight into medical conditions such as Visual Snow Syndrome (onset 2015), Autoimmune Dysregulation and Erythromelalgia, both of which she has managed since childhood. Sierra’s background in creative and media fields enhanced her ability to communicate important topics to diverse audiences in ways that support health literacy, education, and cross-cultural understanding. She has translated neuroscience and medical concepts into engaging, educational multimodal content designed to be accessible across varying health literacy levels, age groups, and backgrounds.
In 2018, Sierra founded the Visual Snow Initiative (VSI), a nonprofit that ignited global awareness, expanded education, developed resources, secured groundbreaking medical recognition, and propelled research for Visual Snow Syndrome, a neurological condition marked by persistent visual and sensory disturbances that can affect vision, hearing, cognition, and quality of life.
Sierra coordinated the effort that secured the first-ever ICD recognition of Visual Snow Syndrome (VSS) and its hallmark symptom, visual snow, from the World Health Organization, achieving a historic milestone in the global clinical and scientific acknowledgment of this complex and historically overlooked condition.
Concurrently, she facilitated multidisciplinary research collaborations with institutions worldwide, including King’s College London, UCLA, MIT, UC Denver, University of Perugia, Monash University, University Hospital of Bern, Johns Hopkins, and the Mayo Clinic. These collaborations focused on biomarkers, pathophysiology, symptomatology, advanced technologies, and treatment development.
Together, these initiatives contributed to establishing foundational diagnostic criteria, creating a Global Physician Directory, developing comprehensive multimodal educational resources for healthcare professionals and patients, and organizing an international conference that brought researchers and affected individuals together
Sierra has also served on the International Advisory Board for the Columbia-WHO Center for Global Mental Health, where she has worked to challenge stigmas surrounding neurological and neurodevelopmental disorders with severe symptoms and limited resources that affect physical and mental health, while advocating for improved resources in underserved regions.
Additionally, Sierra collaborated with the Oxford Mindfulness Foundation on the development of their app, contributing to the creation of a first-of-its-kind, globally accessible module specifically designed for individuals with VSS. This module integrated evidence-based therapeutic frameworks and was informed by interdisciplinary clinical research examining the distinct neurological and perceptual features of VSS, including functional alterations in the visual and salience networks of the brain.
Her work as a research collaborator has intersected with VSS, marginalized medical conditions, the impact of debilitating symptoms on physical and mental health, and the field of neuro-ophthalmology. Sierra’s insights have been featured in Business Insider, Healthcare Brew, Frontiers in Neurology, ABC, CBS, and additional international publications. She has also produced an extensive, comprehensive library of educational and multimedia content on VSS.
Sierra’s diverse professional background includes experience as a voice actor in Los Angeles, CA, a writer and photographer whose work was published in The Miami Herald, and a DJ and radio show host. This unique combination of creative and communication roles has informed her ability to engage diverse audiences and bridge the gap between scientific research and accessibility.
A Multifaceted Approach to Life and Adversity
Nonconformity, resilience, and independent thinking have remained at the heart of Sierra Domb’s identity. While Sierra’s medical challenges have been a significant part of her journey, they have never fully defined her. She has always believed that reducing someone to a single aspect of their experience overlooks their full complexity. Too often, people try to categorize others into narrow definitions, forgetting that we are multifaceted individuals. Sierra has been passionate about showing that adversity, compassion, kindness, intelligence, and strength can coexist and reinforce one another. She has held the belief that life and emotions are nuanced, that one can struggle and still be strong or be kind while also intelligent. For her, identity has never been singular; it is a complex tapestry of diverse interests and strengths, a perspective that has shaped her personal, academic, and professional journey.
Overcoming Medical Challenges and Stigma to Inspire Health Advocacy
Although Sierra’s advocacy in adulthood was shaped by her experiences living with medical conditions and a desire to help others facing similar challenges, she mostly kept her health private during her early years. Since childhood, she managed Autoimmune Dysregulation, a condition where the immune system attacks healthy tissues, and Erythromelalgia, a rare disorder causing intense burning pain and redness in the hands and feet. Her situation was further complicated by visible side effects from medications prescribed to manage her symptoms, which affected her appearance and functional abilities. These challenges sometimes led to difficult reactions from others, particularly regarding her physical changes and ability to keep pace with peers. Balancing health challenges such as immunocompromised states and chronic pain alongside academic and social demands often caused emotional strain and demanded ongoing effort to maintain an outward appearance of well-being, particularly in settings with limited awareness of medical conditions. The later onset of VSS added to these difficulties and inspired her to share her story openly, advocate for increased awareness, reduce stigma, improve patient care, and promote better communication between patients and healthcare providers to foster greater understanding.
Education
- University of Miami
Bachelor’s of Science in Communication Studies || Double-Minor: 1. Film/Motion Pictures 2. Theatre Arts || Magna Cum Laude
CITI Program: Human Subjects Research (HSR) || Group 2: Social-Behavioral-Educational Researchers
Specialties
- Behavioral Sciences & Qualitative Data Analysis
- Communication Studies (Health, Science, Multicultural, Organizational, Nonverbal, and Interpersonal Communication)
- Neuroscience & Neuro-Ophthalmology
- Medical Research & Resource Development (Clinical and Physician-Patient Materials)
- Connecting Medical, Scientific, Research, and Advocacy Professionals to Foster Collaboration
- Advocacy & Public Speaking
- Host, Moderator, Facilitator (Health, Medical, Scientific, Advocacy, Empowerment, and Patient Experience Discussions/Events)
- Journalism, Writing & Reporting
- Photography, Video Production & Editing (Film, Video, Photo, and Articles)
- Voice Acting
Founding VSI
After years of frightening medical tests, agonizing uncertainty, harmful misdiagnoses, and the dismissal of her symptoms as imaginary, Sierra was finally diagnosed with Visual Snow Syndrome (VSS) in her early 20s. VSS was a neurological condition that affected vision, hearing, cognition, sensory processing, and overall quality of life. Despite affecting an estimated 2 to 3 percent of the global population, it remained unacknowledged by the medical community. Like Sierra, countless individuals were misdiagnosed, mistreated, or ignored due to this lack of awareness. For decades, those with VSS faced doubt, ostracism, mistreatment, and even wrongful institutionalization, despite clinical records of the condition dating back to 1944.
Before her diagnosis, Sierra consulted numerous physicians, none of whom were familiar with VSS. Some acknowledged her symptoms but offered grim and uncertain predictions, believing she might go blind or die. Others dismissed her based on normal test results that focused solely on her eyes, overlooking that VSS originated in the brain. This fact had begun to emerge in scientific literature but was still overlooked by the medical community.
In an attempt to treat her symptoms, Sierra was prescribed medications that worsened her condition and triggered harmful side effects. Already overwhelmed by relentless visual static, sensory disturbances, and other neurological symptoms, her daily life became increasingly unmanageable. Medical trauma and neglect compounded her suffering and eventually led to Post-Traumatic Stress Disorder after years of seeking answers and support in vain.
Finding others online with VSS was both cathartic and painful. While some offered support, others told Sierra her life was over, there was no hope, and that she should end her life. As a young woman, it was heartbreaking to see how deeply others were suffering, with some even contemplating suicide.
Eventually, Sierra found a research article that described her symptoms in detail. She contacted its author, who diagnosed her with VSS. In discussions with him and his colleagues, she learned that while they had begun promising research, there was no funding to continue. Without resources, progress had stalled.
Unable to accept that others might continue to endure what she had, Sierra took action. Though she initially felt unqualified, she transformed her frustration and pain into purpose and became determined to create change for herself and others.
In 2018, Sierra organized the first Visual Snow Conference and founded the Visual Snow Initiative, a nonprofit organization that aimed to establish global awareness, education, recognition, resources, and research for VSS.
Sierra helped initiate multidisciplinary collaborations with institutions including King’s College London, UCLA, MIT, UC Denver, the University of Perugia, Monash University, University Hospital of Bern, Johns Hopkins, and the Mayo Clinic. Their research focused on biomarkers, pathophysiology, symptomatology, advanced technologies, and treatment development. VSI’s studies have been featured in publications like Healthline, Frontiers in Neurology, Annals of Neurology, Neurology(American Academy of Neurology), the Journal of Neuro-Ophthalmology, PubMed, and more. VSI also sponsored prominentevents such as the Daytime Emmy Awards and received support from public figures including Ringo Starr of The Beatles.
Drawing from her personal experience and academic background in communication studies, behavioral sciences, and qualitative data analysis, Sierra helped reshape how VSS was understood. Her leadership contributed to critical discoveries in brain network mechanisms and deepened the understanding of VSS as a complex neurological disorder with both visual and non-visual symptoms. Through accessible resources, educational tools, multimedia content, and global research efforts, she empowered patients and professionals alike.
By fostering international collaboration, Sierra played a pivotal role in securing official recognition for VSS in the International Classification of Diseases and advancing research that had once stalled because there was no funding.
Sierra’s efforts reflected her drive to ensure that VSS was better understood, acknowledged, and addressed than it had been when she first experienced the onset of the condition at 21.
Secured official ICD recognition for Visual Snow Syndrome (condition) and Visual Snow (symptom), established the VSS Global Research Team, developed the first diagnostic criteria for VSS, created the first global directory of VSS physicians, hosted the first Visual Snow Conference, and produced physician-patient resources, clinical tools, and hundreds of educational videos for healthcare professionals and patients, boosting VSS awareness through multimedia content
Facilitated, funded, and supported global collaboration among VSS researchers and studies that led to the clinical/scientific acceptance of VSS as a distinct neurological condition (with both visual and non-visual symptoms), discoveries into its pathophysiology, biological basis, and brain network mechanisms, as well as the development of diverse treatment options where none previously existed, helping to increase their global accessibility
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.” – TEDx
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."
Dr. & Prof. 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. & Prof. 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."
Dr. & Prof. Joanne Fielding
Articles & Features
Sierra Domb Explores Homeostasis: How Internal Balance Affects Neurological, Immune, and Sensory Health
World Health Organization Grants Visual Snow Syndrome a Monumental Diagnosis Code | ABC News
Visual Snow Syndrome: The Visual Approach Featuring VSI Founder & Activist Sierra Domb (Emianopsia Magazine, Italy)
Sierra Domb Secures Free Global MBCT Access for Visual Snow Syndrome Patients Through Visual Snow Initiative and Oxford Mindfulness Collaboration
Ground breaking results as Sierra Domb Leads Visual Snow Initiative to Historic ICD Code for Visual Snow Syndrome
Sierra Domb Leads Visual Snow Initiative to Historic ICD Code for Visual Snow Syndrome: WE DID IT!
Sierra Domb Shares
Sierra's Journey in Numbers
"Thank you to everyone who has supported me throughout my personal and professional journeys. At the heart of everything I’ve done has been the goal of making a positive impact. If I’ve been able to help even one person facing a similar challenge, I consider it an honor. I hope my story and work can continue to inspire others around the world."
– SIERRA DOMB
