TESS Research Foundation

10 Reasons we hope you will consider our cause:

1.  We are the only organization in the world solely dedicated to finding a cure for SLC13A5 Deficiency.

2.  Babies born with SLC13A5 Deficiency appear healthy at birth but within the first days of life they begin having unrelenting seizures.

3.  This disease was just discovered in 2014, so families around the world are finally receiving an accurate diagnosis… Sometimes after decades of searching.

4.  This form of epilepsy affects both boys and girls of many races and ethnicities.

5.  If both parents are carriers of SLC13A5 Deficiency, there is 1 in 4 chance their child will develop this type of epilepsy.

6.  Without better treatment options, children with SLC13A5 Deficiency will be dependent on caregivers their entire lives.

7.  SLC13A5 Deficiency is a severe and life threatening form of epilepsy.

8.  Our team of experts at Lucile Packard Children's Hospital Stanford and across the country thinks that a better understanding of the SLC13A5 gene and its role in epilepsy can drastically improve the outcome for the affected children.

9.  Our Board of Directors covers all operating costs so that 100% of your donation goes directly toward research.

10.  The cure may be as simple as a supplement or a re-purposed medicine already sitting on our local pharmacy’s shelf. Help us support the research to find out.

 

Founders' Story:

Twelve years ago, Kimberly Lodato Nye gave birth to her first child, Tessa.  Tessa seemed to be perfectly healthy, but within 24 hours of her birth she began having life-threatening seizures.  She and her husband Zach spent a decade taking Tessa to specialists across the country, but no one could explain why she was having seizures.  Tessa continues to have hundreds of seizures daily. Without better treatment options, she will be dependent on caregivers her entire life.  

Since Tessa’s birth, Kim and Zach had two healthy girls. But a little over two years ago, Kim gave birth to a baby boy, Colton.  He seemed healthy when he was born, but he too began having seizures shortly after birth—just like Tessa.  This experience has been beyond heartbreaking for the Nye family. Colton still does not yet walk or talk, but he has a smile that will melt your heart and eyelashes that will make you jealous. 

While Colton’s seizures were devastating news for their family, it gave the medical research team the key they needed to determine the genetic marker for this disease: SLC13A5 Deficiency. This genetic disease prevents citrate from being transported to Tessa and Colton’s cells. Since Tessa and Colton’s diagnosis, dozens more children have been diagnosed with this disease.

Having a diagnosis has given us a renewed sense of hope and a new path forward to help Tessa and Colton. Kim and Zach formed TESS Research Foundation, a 501(c)(3) public charity organization to fund cutting edge research aimed at finding better treatment options, and ultimately a cure, for children with SLC13A5 Deficiency.  

We invite you to learn more about TESS Research Foundation by visiting our new website at: TESSresearch.org. 

Thank you for your support!