TODAY, May 13th is SLC13A5 Epilepsy Awareness Day 💜 Meet the Faces Behind our Mission

Today is SLC13A5 Epilepsy International Awareness Day!

Behind these beautiful faces of our TESS Superheroes is a family and community who commit their lives to caring for, supporting, championing, and loving them unconditionally. It requires infinite patience, compassion, time, and energy.

We dedicate Awareness Day to them.

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TESSA AGE 22

Original Superhero Tessa inspires everyone with her perseverance and strong desire for independence, though she still needs daily support with basic care such as feeding and dressing. SLC13A5 Epilepsy impacts entire families, as it requires ongoing, around-the-clock care into adulthood.

JACOB AGE 12

Superhero Jacob has the most contagious smile that lights up every room he is in. Jacob also has weak enamel and hypodontia, common in SLC13A5 Epilepsy, causing missing teeth and difficulties with chewing and speech.

ABHI AGE 19

Superhero Abhi is celebrating big milestones! When he was born, he experienced severe seizures that required emergency airlift. Abhi’s parents didn’t even know if he would survive. Frequent and uncontrollable seizures beginning soon after birth are among the earliest signs of SLC13A5 Epilepsy.

ELLIE AGE 9

There is nothing Superhero Ellie enjoys more than making jokes and being the boss! Because of speech difficulties common in SLC13A5 Epilepsy, she relies on her device (AAC) to communicate. Ellie is incredibly savvy with her “talker” and loves making people laugh.

JACKSON AGE 7

Superhero Jackson just can’t wait to take his first steps! Mobility has always been a challenge for him. Like many of our TESS Superheroes, Jackson has hypotonia, leading to low muscle tone, often described as “floppy,” and delayed walking.

DONATE

Thank you for standing with Superheroes and their families this SLC13A5 Epilepsy International Awareness Day. Every shared story, conversation, and act of support brings us closer to greater awareness, better treatments, and more hope for the future.

TESS Research Foundation drives cutting-edge research to diagnose, treat, and ultimately cure SLC13A5 Epilepsy, while providing support for affected children and their families.

We will have succeeded when all children with SLC13A5 Epilepsy lead healthy and independent lives.

TESS Research Foundation is a 501(c)(3) tax-exempt public charity.

Tax ID 47-3108868