As a mother myself, I know that a parent’s biggest fear is having a child with a serious health problem, seeing their pain, and being powerless to stop their suffering. Uncontrollable seizures, not being able...
Yavi is a SLC13A5 Superhero. Here are a few fun facts Yavi's parents shared with us! Age: 2 Hometown: Ridgefield, WA Siblings: He has 3 sisters and 2 brothers. Favorite food: He loves most food,...
TESS Research Foundation originally anticipated clinical trials for a gene therapy targeting SLC13A5 Epilepsy (SLC13A5 Deficiency) to launch by the end of 2022. It’s 2024, so, why haven’t these trials started yet? We know our community...
SLC13A5 Epilepsy affects not just individuals, but friends and families as well. The following perspective, as told by Seth, sibling to TESS Superhero Lucas, aims to give insight into what it might be like to...
I am the mother of 28-year-old TESS Superhero Scott, who had a long pathway to the diagnosis of SLC13A5 Epilepsy, having only found out that he had the condition at the age of 26. At...
TESS Research Foundation hosted our 8th SLC13A5 research conference and what a powerful, motivating, and packed two days! We hosted 110 attendees both in person and virtually in Providence, Rhode Island on August 2-3, 2024....
Abhi is a SLC13A5 Superhero. Here are a few fun facts Abhi's parents shared with us! Age: 13 Hometown: Austin, TX Personality traits: Happy, funny and a little naughty! Likes: Messing with people, being competitive...
My first inspiration is Meredith. She is a determined little girl that gives life her all. She inspires me to push myself as hard as she does. My second inspiration is the TESS community. Since...
CIRM's support is crucial for advancing our clinical trials. Rare diseases like SLC13A5 Epilepsy are life-long, life-limiting and often life-ending, so the risk benefit profile weighs in favor of trialing genetic therapies to improve outcomes...