Power Our Clinical Trial

Dear Friends and Supporters of TESS,

When our daughter Tessa was born in 2003, she suffered constant seizures and couldn’t move or speak like other children. It wasn’t until ten years later, when her brother Colton was born with the same condition, that we finally received a genetic diagnosis and launched TESS Research Foundation.

Because of your support, what we’ve accomplished since then is unprecedented! We’ve advanced science faster than anyone thought possible. This spring, TESS will launch the first gene therapy clinical trial to address the root cause of SLC13A5 Epilepsy.

This landmark trial brings us closer than ever to our goal of treating babies within days of birth, sparing them a lifetime of suffering. To make it happen, we must raise $450,000 by December 31 - and a group of longtime donors will match the first $100,000!

Please join us in turning our progress into treatments. When the first child is dosed, this historic achievement will belong to all of us.

Kim Lodato Nye

Founder & Executive Director

Mom to TESS Superheroes, Tessa and Colton

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"It’s incredible to see science move from the research bench into the clinic so quickly. Developing a drug can take up to 30 years or more, but TESS has done it in less than a decade."

Rachel Bailey, PhD - Assistant Professor at UTSW

Developer of SLC13A5 Gene Therapy

After years of persistence, TESS will sponsor the first gene therapy clinical trial for SLC13A5 Epilepsy. Lead scientist Dr. Rachel Bailey designed a therapy using a proven vector to deliver a working copy of the SLC13A5 gene. Pre-clinical animal studies show strong signs of potential.

With your support, the first child will receive the therapy in early 2026, and a second soon after. Families will spend months at UT Southwestern while critical safety and dosing data is gathered. If successful, the trial will expand to more children and broader age groups, serving as a gateway to future studies.

It’s taken seven years and millions of dollars to achieve what takes pharmaceutical companies decades and billions. This extraordinary progress was made by our community of superheroes, families, researchers, and YOU - our dedicated donors.

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Tessa, Age 21

Tessa spent the first decade of her life waiting for a diagnosis. For her family, that diagnosis marked the end of a long search and the beginning of a hopeful new future. Because SLC13A5 Epilepsy stems from a change in a single gene, it opened a clear path toward gene therapy.

Meredith, Age 7

A part of the TESS community since birth, Meredith’s participation in our natural history study provided essential insight into the disease progression and laid the groundwork for our clinical trial protocol.

Adelyn, Age 7 Months

Meredith’s little sister Adelyln was diagnosed before birth and received early symptomatic care that nearly eliminated her seizures. Adelyn’s improved quality of life is monumental, and yet it’s still not enough.

Your gift toward our goal of $450,000 by December 31st drives the trial, enabling the next step in a decade of breakthroughs. And the first $100,000 given will be matched 1:1!

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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