Our Story
On November 26, 2019, a family welcomed their fourth son, Tristan, into the world. Initially, everything seemed stable, but concerns arose when Tristan showed developmental delays. After a long journey of seeking answers, a genetic test revealed a KCNH1 gene mutation, a rare condition affecting only 50-100 children globally. This diagnosis brought overwhelming challenges, including profound intellectual disability and severe epilepsy.
Determined to change Tristan's fate, the family began reaching out to researchers and advocates worldwide. They discovered that other families had successfully raised millions for gene therapies, igniting hope and the desire to create a similar path for Tristan. Thus, the Cure KCNH1 Foundation was born, dedicated to finding a cure for KCNH1-related disorders.