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My Name is .
Sierra Domb is a Cuban-American humanitarian, activist, and research collaborator who has led groundbreaking global health initiatives. With a focus on neuroscience, health communication, and empowering others through medical-related adversity, she has worked to raise global awareness, improve resource accessibility, facilitate research, and advance the recognition and management of marginalized medical conditions, particularly Visual Snow Syndrome (VSS). Sierra founded the Visual Snow Initiative (VSI), a nonprofit dedicated to advancing worldwide 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 humanitarian, activist, research collaborator, and the Founder of the Visual Snow Initiative (VSI), a groundbreaking nonprofit that has led efforts to raise global awareness, advance education, and support research for Visual Snow Syndrome (VSS). Her leadership has driven critical advancements in the clinical and scientific recognition of VSS, leading to major research discoveries and expanding access to diagnosis, treatment, and resources for millions of all ages worldwide. She led the historic initiative that secured the first-ever ICD recognition of both Visual Snow Syndrome and its hallmark symptom, Visual Snow, characterized by the constant presence of static or snow-like dots across the visual field 24/7.
Sierra has 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 lack of resources to help, which can impact mental health, while advocating for better resources in underserved regions. A TEDx Speaker and 2024 UMiami “30 Under 30” Award-Winner, she has also been an author and collaborator at Oxford Mindfulness.
Sierra has led collaborations between physicians and academic institutions while developing innovative solutions with researchers. Passionate about accessibility, she has worked to translate neuroscience and complex medical concepts into palatable, engaging content for individuals of all ages and health literacy levels. Her work has been featured in Business Insider, Healthcare Brew, Frontiers in Neurology, CBS, and more, and she has also produced educational and multimedia content on VSS.
Sierra’s experiences with the onset of Visual Snow Syndrome in 2015 and lifelong struggles with Autoimmune Dysregulation and Erythromelalgia fueled her resolve to transform these challenges into a catalyst for positive change, bridging the gap between patients and physicians. Initially hesitant to discuss her health due to bullying over appearance-altering medication side effects and physical limitations caused by her conditions, which made it difficult to keep up, her desire to help others facing similar struggles ultimately motivated her to overcome this hesitancy. By sharing her story, Sierra has worked to raise awareness, advocate for patients, and inspire meaningful change in the medical and research communities.
Her academic expertise has spanned behavioral sciences, health communication, and qualitative data analysis, with a strong focus on neuroscience, research, and global health advocacy. Sierra’s work as a research collaborator has intersected with VSS, the marginalization of medical conditions, the impact of debilitating symptoms on physical and mental health, and neuro-ophthalmology.
Sierra’s diverse professional background also 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/Radio Show Host.
This unique blend of experiences has informed her ability to connect with diverse audiences and bridge the gap between scientific research and accessibility.
Sierra Domb: Her Multifaceted Approach to Life and Adversity
Nonconformity, resilience, and independent thinking have been at the heart of Sierra Domb’s identity. While her medical challenges have been 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.
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, 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, a neurological condition that affects vision, hearing, cognition, sensory processing, and overall quality of life. Despite impacting an estimated 2-3% of the global population, VSS remained largely unrecognized within the medical community. Like Sierra, numerous individuals of all ages worldwide were dismissed, misdiagnosed, and mistreated due to this lack of awareness.
The few doctors who recognized the validity of her symptoms warned Sierra that she might go blind or die, but they couldn’t determine when or if it would happen, as tests on her eyes kept coming back “normal” when VSS was a brain condition all along. She was prescribed medications that only worsened her condition, causing new and harmful side effects. The relentless visual static, sensory disturbances, and other neurological symptoms were already overwhelming, making daily life unmanageable. Compounded by medical trauma, misdiagnoses, and neglect, her condition worsened, and she developed Post-Traumatic Stress Disorder (PTSD) from years of searching for answers and support with no resources or hope.
Finding others online with Visual Snow Syndrome 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, some even contemplating suicide. This wasn’t just her experience; for decades, individuals with VSS had faced doubt, ostracism, mistreatment, and even wrongful institutionalization. Clinical records of the condition date back to 1944, yet the medical field had largely ignored those affected.
Sierra couldn’t bear the thought of anyone else enduring what she went through. Despite feeling unqualified at the time, she knew nothing would change unless she tried. She channeled her frustration and trauma into action, determined to help both herself and others facing the same struggles. In 2018, she organized the first Visual Snow Conference and founded the Visual Snow Initiative (VSI), a nonprofit dedicated to raising awareness, providing education and resources, advocating for patients, and advancing research and treatment for VSS.
VSI’s efforts earned recognition from major medical and scientific institutions, including the WHO, Mayo Clinic, Cleveland Clinic, NIH, NIHR, NHS, Healthline, Frontiers in Neurology, Brain Communications, Annals of Neurology, Neurology (American Academy of Neurology), the Journal of Neuro-Ophthalmology, PubMed, and more. VSI also sponsored prominent events like the Daytime Emmy Awards and received support from public figures, including The Beatles’ Ringo Starr.
Drawing from her personal experience with VSS and her expertise in communication studies, behavioral sciences, and qualitative data analysis, Sierra’s unwavering advocacy and leadership transformed the narrative surrounding VSS within the medical and scientific communities. She played a pivotal role in raising awareness of the condition and empowering both patients and medical professionals with accessible resources, educational materials, multimedia content, diagnostic tools, groundbreaking research, and diverse treatment options. Her efforts also contributed to historic discoveries in biomarkers, pathophysiology, and brain network mechanisms, deepening the understanding of VSS. By bringing together global researchers and fostering collaboration, Sierra advanced critical work on VSS, secured its recognition as a distinct neurological disorder with both visual and non-visual symptoms, and led a successful, historic initiative to gain recognition for VSS and its symptoms in the International Classification of Diseases.
Sierra’s resilience, relentless efforts, and progress have reflected her drive to make VSS better understood, recognized, and addressed than 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."
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
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 on Visual Snow Syndrome: A Journey of Resilience, Medical Trauma, and Advocacy – Patient Worthy
Visual Snow Initiative, Experts Advocate for Global Legitimacy for Visual Snow Syndrome
Sierra Domb Shares
Sierra's Journey in Numbers
"Thank you so much to everyone who has supported me throughout my personal and professional journeys! At the heart of everything I’ve done, my goal has always been to make a positive difference in the lives of others. If I’ve been able to help even one person going through something similar, I consider that a true privilege. I’m deeply grateful for every opportunity to contribute positively to our world, and I hope my story and work can continue to empower others around the world."
– SIERRA DOMB
