TESS Research Foundation was founded to improve the lives of those affected by SLC13A5 Epilepsy. To achieve our goals, TESS funds cutting-edge research, provides support to people affected by SLC13A5 Epilepsy, and increases awareness about this severe neurological disorder.
We do this across countries because SLC13A5 Epilepsy does not know geographic boundaries. We do this collaboratively because it takes a team of scientists to improve treatments and find a cure. We do this with urgency because our loved ones are sick now. We are in a hurry to catch the disease up to advances in science.
TESS Research Foundation was founded by the Nye family. Read about their journey to a double diagnosis of their first born, Tessa, and their fourth child, a son named Colton, born 10 years apart here.
The Nye family’s diagnostic odyssey led to the discovery of a genetic marker responsible for SLC13A5 Epilepsy. The discovery of that marker in 2014 enabled the Nyes to galvanize research teams at leading centers to accelerate the development of treatment and cures.
Soon after, they met other families around the world living with the same diagnosis and a dire need for better treatments. The Nye family founded TESS Research Foundation in 2015 to expeditiously connect families, clinicians, and researchers.
TESS is a patient-centered research network. We are determined to expedite diagnoses, improve treatments, standardize management, and ultimately cure SLC13A5 Epilepsy.
One Diagnosis, Many Names
SLC13A5 Epilepsy, SLC13A5 Deficiency, Citrate Transporter Disorder, Early Infantile Epileptic Encephalopathy 25 (EIEE25, EIEE-25), Kohlschutter-Tonz Syndrome, Developmental Epileptic Encephalopathy 25 (DEE25), NaCT, and Indy. Why does one condition have so many names? Read What’s In a Name here.