Founder / Backstory

With “normal” results after reporting all these symptoms, Sierra was treated as a medical oddity. Her confounding case was met with mixed reactions, which ranged from fascination to frustration. Some physicians expressed compassion for her situation. Others blamed their inability to identify the problem via testing on her, insinuating there must be nothing truly wrong and it was “all in her head”. These dangerous implications and falsehoods only harmed Sierra’s health and wellbeing further. Void of any answers or hope, she began to lose faith in the medical system.

Soon thereafter, Sierra decided to take matters into her own hands. She realized it was up to her to figure this out and began doing research online. After locating an article published in a well-known medical journal that described her symptoms with astonishing precision, Sierra discovered that she had a medical condition called Visual Snow Syndrome, or VSS. VSS is a neurological disorder, which explained why all the tests physicians performed on her eyes always came back normal. VSS can affect vision, hearing, cognition, sensory processing, and quality of life. The primary, most common symptom of VSS is seeing visual snow, which refers to seeing static, flickering dots, and flashing lights across the entire visual field 24/7 (with your eyes open and closed). VSS also entails many other visual and non-visual symptoms, which Sierra was experiencing.

Upon further research, it soon became evident that she was not a medical outlier. Sierra learned that, in actuality, her story mirrored that of thousands of people around the world. The vast majority embarked on medical odysseys much like hers. Most were distraught from being marginalized, mistreated, misdiagnosed, and/or not diagnosed. They were left isolated and traumatized due to the severity of their symptoms and the lack of acknowledgement for VSS on behalf of the medical community.

After her own harrowing experience and realizing what others were going through, Sierra decided to become a philanthropic pioneer dedicated to establishing newfound awareness, education, resources, and research for VSS. She began learning about neuroscience, vowing to advocate for herself and others who were suffering from the debilitating visual and non-visual symptoms of VSS.

In 2018, Sierra and her team organized the first Visual Snow Conference in history at UCSF, a free summit that brought together VSS patients and their families with doctors, researchers, and scientists with knowledge of VSS from Australia, Canada, England, and various cities in the United States. Thereafter, she founded VSI and created a Global Research Team comprised of physicians, scientists, and researchers from around the world. Together, they collaborated to create essential physician-patient resources, such as the first-ever Diagnostic Criteria for Visual Snow Syndrome and the first-ever Directory of VSS Physicians & Specialists. The establishment of clinical criteria for VSS, global awareness, and scientific evidence via VSI-funded studies led to the clinical, scientific acceptance of VSS as a distinct, neurological condition (with both visual and non-visual symptoms) that affects vision, hearing, sensory processing, and cognition, as well as the development of treatments where none existed.

Sierra’s organization has played a pivotal role in legitimizing VSS and getting it officially recognized by international health organizations. VSI’s activism, studies, and established legitimacy for the condition have been acknowledged by medical/scientific institutions, such as WHO, Mayo Clinic, Cleveland Clinic, NIH, NIHR, NHS, and Healthline. The studies funded by VSI have resulted in discoveries regarding the biological basis, pathophysiology, and treatment of VSS symptoms, as documented in medical and scientific publications, such as Frontiers, Frontiers in Neurology, Brain Communications, Annals of Neurology, Neurology (American Academy of Neurology), Journal of Neuro-Opthalmology, and PubMed.