Patient Community Stories
Jett inside when others are outside

Patient Community Stories

The patient community knows first-hand what it means to go on a “diagnostic journey,” coordinate care teams, manage numerous medications, make multiple trips to the emergency room, seek hope in clinical studies and navigate the world while also living with or caring for someone with a pediatric central nervous system disorder.

Meet some of the extraordinary people from the patient community.


Finn’s Story

Lauren, a school teacher, mother of four and a self-described “beach junky,” shares a day in the life of her youngest son, Finn, who lives with Dravet syndrome.


Jett’s Story

For this family of four, receiving news that their son, Jett, had Dravet syndrome was devastating. Adjusting to their family’s lifestyle has not been an easy ride.


Malcolm’s Story

Mikell and Nick describe how their lives have completely changed over the last three years since their youngest son, Malcolm, was diagnosed with Dravet syndrome.

We thank these families for their willingness to share their stories.

By doing so they not only help build awareness around these disorders through their lived experiences, but also forge connectivity and community with others who are going through similar journeys.

If you are interested in sharing your story or connecting with a member of our Patient Advocacy & Engagement team, please email By providing your information, you agree to allow Encoded Therapeutics to collect the name and email address provided and to be contacted by Encoded and its partners using this information.