RAO Network

TESS Research Foundation

Kim Nye, her husband Zach, and their four children go on a walk together. Tessa (on tricycle) and Colton (with walker) both have SLC13A5 Citrate Transporter Disorder. Photo courtesy of TESS Research Foundation.
Kim Nye, her husband Zach, and their four children go on a walk together. Tessa (on tricycle) and Colton (with walker) both have SLC13A5 Citrate Transporter Disorder. Photo courtesy of TESS Research Foundation.

Building a roadmap toward cures for genetic epilepsies

Patients and patient advocates deserve to be brought in as stakeholders from the very beginning. Kim Nye, co-founder and president of TESS Research Foundation, fights for this daily. Two of her four children have SLC13A5 Citrate Transporter Disorder, a recently discovered rare disease with no cure. This prompted her to launch the Foundation in a quest to spur collaborative research and accelerate the development of treatments.

Imagine having hundreds of seizures a day, a movement disorder like Parkinson’s, and the ability to understand language, but only utter a few words. This is the reality for children around the world living with SLC13A5 Citrate Transporter Disorder. TESS Research Foundation believes in creating a future where this is no longer the reality for families affected by SLC13A5 Citrate Transporter Disorder.

As part of the Rare As One Network, TESS Research Foundation hopes to build a roadmap toward cures for genetic epilepsies. Their mission is to help families find a diagnosis; connect more patients, doctors, and researchers; and create disease-modifying treatments. The Foundation’s ultimate goal is to create a research network that will help highlight the connections between rare diseases and common diseases.

Patients and patient advocates deserve to be brought in as stakeholders from the very beginning.

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