RAO Network

TESS Research Foundation

Kim Nye (far left), her husband Zach (far right), and their children Tessa (right) and Colton (left) read a book together on the couch
Kim Nye, her husband Zach, and their children Tessa and Colton read together. Tessa and Colton both have SLC13A5 deficiency. 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, and this is what Kim Nye, co-founder and president of TESS Research Foundation, fights for. Two of her four children have SLC13A5 mutations, which prompted her to launch the Foundation in a quest to find answers and a cure.

SLC13A5 deficiency is an autosomal recessive disorder, which means two copies of an abnormal gene must be present in order for the disease or trait to develop. Affected children have seizures beginning within a few days of birth that persist throughout life. They experience difficulty with speech production, limited and slow motor progress, and problems standing or walking independently. There’s no cure for SLC13A5 deficiency, and patients require constant supervision and care. 

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 and lead to improved world health.

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

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