Tatiana graduated from the University of Central Florida with a bachelor’s degree in Legal Studies, Criminal Justice, and Political Science. Thereafter she transitioned to community based social work where she would receive advocacy requests from educators, court liaisons, therapists, doctors, etc. to assist individuals with identifying needs and resources needed to become stable and improve quality of life. She spent the last 15 years advocating for children, adults, and families—working tirelessly to ensure their voices are heard and their needs met.
In 2019, Tatiana gave birth to a daughter named Eliana. At two months old, Eliana began to have seizures and over time they became stronger and more frequent. The breaking point for her medical team came the day Eliana had a 3-hour seizure, with no relief from medication, and had to be intubated. With many tests coming back negative, genetic testing was done, and she was found to have the SCN1A gene mutation and was diagnosed with Dravet Syndrome.
This dual perspective—as both a professional advocate and a parent navigating the system—has given her a unique and deeply personal understanding of the gaps and challenges within the healthcare and support networks. She hasn’t just identified systemic deficits; she has lived them.
She knows what it feels like to be unheard by medical professionals, to be dismissed, and to face racism and sexism in moments when compassion and support were most needed. Tatiana was once told her daughter didn’t need a medical specialist to address her neurological concerns—but that instead Tatiana needed mental health therapy for what was assumed to be postpartum depression. These experiences have only deepened her commitment to fight for equitable, compassionate care for all families.
Tatiana began her advocacy in the rare disease community, specifically for Dravet syndrome with her daughter’s diagnosis in 2020. She recently completed the spring 2025 Rare Advocacy Learning program, “Understanding the Rare Disease Community’s Imperatives” and the Rare Advocacy Learning Plus (“RAL+”) cohort program. Tatiana has attended Rare Disease Week on Capitol Hill in 2024 and 2025.
