Our Story

Our family’s rare journey with OTC Deficiency began shortly after our son, Etan, was born in August of 2022. Life never looked the same after Etan’s diagnosis at the age of five days old. In a matter of hours, we went from living a normal life, to suddenly fighting for our son’s survival. And that is how “CureOTCD” emerged, with the clear mission to find a curative treatment for this devastating condition for the paediatric population, as soon as possible.

Photo credit: Patient Voice

Kate Vinokurov, Founder

Kate is Etan’s mother. Shortly after Etan’s diagnosis with Early Onset OTC Deficiency, Kate has become a relentless advocate dedicated to changing the trajectory of children diagnosed with this condition. Kate is committed to pushing for better, and more individualized treatment options for her rare community. Her son’s and her mutation is ultra rare (c.77G>A), with about 11 people impacted worldwide.