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My Name is .

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 a 2025 Extraordinary Latinas Award nominee in the “Amplifying Voices” category for her advocacy work on underrepresented health topics, including accessible education on homeostasis and the interplay of neurotransmitters and hormones in women’s health and chronic illness. Sierra has contributed as an author and collaborator to organizations like Oxford Mindfulness and the Erythromelalgia Association, where she has also served as a member and guest speaker. In 2026, Sierra and her team received three Communicator Awards of Distinction in the categories of Integrated & Multi-Channel Non-profit Campaigns, Film & Video: Causes & Awareness, and Websites: Causes & Awareness.

Sierra Domb is a contributing author of the book Extraordinary Latinas Vol. V: Reclaiming Courage, Healing, and the Power Within, which debuted as a #1 Best Seller and #1 New Release on Amazon in 2026. Her chapter, Transforming Pain into Progress: A Life Shaped by Illness, Resilience, Inquiry, and Action, is dedicated to “all who suffer, feel different, unheard, or unseen, and to those who remain kind, offer support, take action, or try their best despite life’s hardships”. In it, she reflects on lifelong medical challenges, experiences of difference and loss, the development of resilience amid adversity, and the courage to defy convention.

Sierra’s full bio and credentials are provided below, and her work is featured throughout the website.

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About Sierra Domb

Professional Experience

Born in Miami, FL, and based in Los Angeles, CA, 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.

As a member of the Erythromelalgia Association, Sierra has advocated for awareness of the condition, contributed as an author, and served as a guest speaker on neurological topics such as brain health and homeostasis, while also sharing her personal experiences living with Erythromelalgia.

Sierra was a 2025 Extraordinary Latinas Award nominee for her advocacy work, including creating resources, amplifying patient voices, and raising awareness of overlooked health topics such as homeostasis, women’s health, chronic illness, and the crucial yet understudied role of neurotransmitters and hormones.

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.

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.

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 neurovascular peripheral pain disorder causing intense burning pain and redness in the hands and feet. Her situation was further complicated by the visible effects of her conditions and the medications used to manage them, which impacted both 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.

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.

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)
  • Writing, Journalism & 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 prominent events 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.

Visit the Visual Snow Initiative Website

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

Sierra Domb - Visual Snow Initiative - Photo 4
“In a world that often promotes conformity, insecurity, self-serving systems, and appearances over substance, choosing to be yourself and focusing on what you contribute and how you treat others are important acts of rebellion. We cannot choose the health or appearance we are born with, nor how others will treat us, but how we respond shapes our character. Do not fear being different. Suffering is inevitable, but leaving it meaningless is optional. Amidst injustice or hardship, let your actions foster resilience, kindness, and the change you hope to create for yourself and others, knowing that as long as you try your best, that is enough.”
Sierra Domb
“Persistence despite doubt separates those who spark change from those who accept the status quo.” 
Sierra Domb
We're a Winner-The Communicator Awards

The Visual Snow Initiative team, including Sierra Domb, Vanessa Mora, Mehrad Mazaheri, and Marton Varo, was honored to receive three 2026 Communicator Awards of Distinction in recognition of its work advancing awareness, education, and resources for Visual Snow Syndrome (VSS). The awards recognized an integrated multi-channel campaign (Campaign – Non-Profit: Integrated & Multi-Channel Campaigns), the original educational video “What is Visual Snow Syndrome?” (Film & Video: Causes & Awareness), and the Visual Snow Initiative website (Websites: Causes & Awareness), each contributing to broader understanding and global progress in VSS awareness, education, and accessible resources for patients, medical professionals, and researchers.

Testimonials

“It has been an absolute pleasure to work with Sierra over the past eight years as the Founder and CEO of Visual Snow Initiative. From her start in this endeavour, I have witnessed firsthand the transformative impact of her work. Her advocacy has brought global attention to a condition that was once unknown and overlooked, and she has empowered scientists like me to pursue groundbreaking studies that would not have been possible otherwise. Beyond research, Sierra has worked tirelessly to build a supportive community. I want to take this moment to acknowledge all that the Visual Snow Initiative has accomplished under Sierra's leadership and reaffirm my commitment to continuing our close collaboration, working with the Visual Snow Initiative team as we continue dedicating our efforts to uncovering the mechanisms of Visual Snow Syndrome and developing effective treatments for patients worldwide.”
Dr. Francesca PuleddaResearcher, King’s College London
“In 2015, Professor Joanne Fielding, my co-director of the Ocular Motor Research Laboratory at Monash University, and I commenced independent research to try and define the psychophysical and physiological parameters of Visual Snow Syndrome. In 2018 we were invited to the inaugural meeting of the Visual Snow Conference, where we first met Sierra Domb, a young woman who organized this first-ever VSS conference and had a large personal stake in Visual Snow Syndrome. The conference brought together a number of clinical and research people who believed in the syndrome as a true entity, together with a large number of patients, all of whom had suffered substantially, being at the more extreme end of the spectrum, who had largely felt invalidated and devalued by their involvement with the medical profession. That was the status of Visual Snow at that time. Sierra Domb subsequently created the non-profit organization, Visual Snow Initiative (VSI). She grew the organization while literally growing herself. Under her guidance, the Visual Snow Initiative has become the de facto leading organization in the field internationally. It has provided a voice for patients worldwide. It has provided an information resource for patients and clinicians worldwide. It has brought patients and clinicians together where necessary and possible. It has promoted research and clinical facilities worldwide. It has been intimately and constructively involved in the validation of the clinical entity and, most impressively, has substantially modified the opinion of the bulk of medical practitioners in the Western world at least. VSI has fostered collaboration amongst the extant medical research groups and has encouraged many people into the field. VSI was foundationally involved in the registering of Visual Snow Syndrome and Visual Snow, the symptom, in the ICD-11 (International Classification of Diseases). All of that is due to the hard work and organization by Sierra Domb. VSI is Sierra and Sierra has been VSI.”
Professor Owen B. White & Professor Joanne FieldingCo-Directors, Ocular Motor Research Laboratory, Monash University, Melbourne, Australia
“It was with regret that I had to hear that Sierra Domb is retiring from the position of President and Ambassador of the Visual Snow Initiative (VSI). Sierra founded the VSI and shaped this group like no one else. With the VSI, Sierra Domb has succeeded in revolutionizing our understanding of the disease. On the one hand, she was able to raise awareness of this clinical picture and raise it to the circle of objectifiable neurological diseases. Among other things, Visual Snow Syndrome has been listed in the International Classification of Diseases. On the other hand, with private funds and donations, the VSI is the world's most important supporter of serious and systematic research in this field. As a result, there has been a significant increase in research activity in recent years, which has improved our understanding of Visual Snow Syndrome and thus made it possible to investigate therapies for the first time. I would like to express my sincere gratitude to the Visual Snow Initiative and especially to the founder Sierra for committing to the understanding of this disorder, which has received little attention so far. We all aim and will continue to search for an effective therapy for VSS. If this quest succeeds in the future, it will certainly be thanks to the great commitment of Sierra and her team. I wish Sierra all the best for the future and thank her once again for her trust in my research and clinical dedication.”
Dr. Christoph SchankinProf. Dr. med., Neurologie FMH
“Sierra Domb, Visual Snow Syndrome and the Visual Snow Initiative: When the history of Visual Snow Syndrome (VSS) is written there will be few brighter spots or names than Sierra Domb. Dedicated, enthusiastic, and passionate, she brought an energy to the cause as she set up the Visual Snow Initiative (www.visualsnowinitiative.org), which has propelled the area forward in a remarkable way. VSS was certainly a wasteland of both research and interest when modern efforts began less than fifteen years ago. It is not so long ago that one can recall being regarded as wasting time and effort on the subject when talking about it in public (1). VSI, spear-headed by Sierra, came into a nascent scene and literally supercharged it. Rather than providing a jeremiad, meetings were organized, research funded, and information provided. Most of all, she provided support of a moral type for those of us in research and for those blighted by the problem; we are indebted. A sufferer herself, those insights into the journey, the setbacks, the frustrations and the limitations VSS places on those with the problem provided direction and motivation that has helped us all move forward. Most recently getting behind and helping us with our discussions and presentations to the World Health Organisation that directly resulted in VSS coming of age and being accepted into the International Classification of Diseases. This is the first step of widespread acceptance since it can no longer be said the problem does not exist. Sierra will be missed by all of us. Yet what has been started can never be suppressed or rolled-back. The enthusiasm provided a momentum that will not be quelled and the intellectual curiosity challenges that will burn on in research until this problem is solved and properly treated. Thank you seems insufficient; insufficient was never in Sierra’s vocabulary. Onward forward is your legacy, and so it shall be.
Dr. Peter GoadsbyProfessor and Researcher, UCLA and King’s College London

Articles & Features

Sierra Domb – Extraordinary Latinas Book Chapter: “Transforming Pain into Progress: A Life Shaped by Illness, Resilience, Inquiry, and Action”
Jul26

Sierra Domb – Extraordinary Latinas Book Chapter: “Transforming Pain into Progress: A Life Shaped by Illness, Resilience, Inquiry, and Action”

In her Extraordinary Latinas chapter, Sierra Domb reflects on chronic illness, including Visual Snow Syndrome (VSS), Autoimmune Dysregulation (AD), and ...
Read More →
Founded by Sierra Domb, Visual Snow Initiative Selected for WHO/Europe Public Health Innovation Platform
Jul10

Founded by Sierra Domb, Visual Snow Initiative Selected for WHO/Europe Public Health Innovation Platform

Founded by Sierra Domb, the nonprofit Visual Snow Initiative (VSI) was selected for inclusion in the WHO/Europe Public Health Innovation ...
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New Podcast Episode on On One Condition: Sierra Domb on Visual Snow Syndrome
Jun14

New Podcast Episode on On One Condition: Sierra Domb on Visual Snow Syndrome

On One Condition is a podcast dedicated to exploring the realities of living with specific health conditions. Through candid conversations, ...
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Visual Snow Initiative Receives Three 2026 Communicator Awards of Distinction
Jun13

Visual Snow Initiative Receives Three 2026 Communicator Awards of Distinction

The Visual Snow Initiative (VSI) is proud to announce that we have received three 2026 Communicator Awards of Distinction for ...
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Sierra Domb on the Challenges of Advocacy, Managing Chronic Illness, and Life Lessons
Apr09

Sierra Domb on the Challenges of Advocacy, Managing Chronic Illness, and Life Lessons

2026 Q&A Part 3 Sierra Domb, medical advocate and Founder of the Visual Snow Initiative (VSI), shares the challenges of advocating ...
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Apr02

Sierra Domb on Advocacy, Raising Awareness, and Founding the Visual Snow Initiative

2026 Q&A Part 2 Sierra Domb, medical advocate and Founder of the Visual Snow Initiative (VSI), shares her journey in ...
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Sierra's Journey in Numbers

countries affected by VSS that have received support from VSI
0
VSS research projects funded and/or supported by VSI
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educational and multimedia contents about VSS produced
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videos, guides, articles, and tools supporting people affected by Visual Snow Syndrome.
0

"My body of work has been dedicated to those who suffer, feel different, unheard, or unseen, as well as those who choose kindness, offer support, take action, or do their best to be there for others despite life’s challenges. Thank you to everyone who, while facing their own challenges, offered me kindness, collaboration, and encouragement. 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