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Hello TESS Friends,
When our son Colton was born, he began having seizures just like his big sister Tessa had ten years earlier. Soon after, researchers identified that this disorder results from changes in the SLC13A5 gene and eventually, Tessa and Colton received a diagnosis of SLC13A5 Epilepsy. But there was no information about this rare disease; no one was investigating it and we were left with fear, questions, and a mission to find answers.
Ten years ago today, my family founded TESS Research Foundation with little more than a name and an unwavering determination to help our children and every family affected by SLC13A5 Epilepsy. From the first moments of life, this disorder causes relentless seizures, severe movement challenges, and communication barriers. But what began with heartbreak has grown into a decade-long journey of hope, perseverance, and community.
Over the past ten years, we’ve grown from a small family-led effort into a global organization driving cutting-edge research, connecting families, and funding the tools we need to find a cure. We have shortened the journey to diagnosis for new families, launched a gene therapy program, and built a natural history study to prepare for clinical trials. We have an amazing team of researchers and clinicians who have stuck with us from the beginning.
None of this would be possible without YOU.
Thank you for every dollar donated, every story shared, every event attended, and every kind word spoken to a family navigating this impossible diagnosis. Your belief in our mission has carried us through the hardest moments and helped us get closer to milestones we once thought were out of reach. From the bottom of my heart, thank you.
But we’re not done. The next chapter is even more urgent. We need treatments and we need them now. We need to get our gene therapy into our TESS Superheroes. This is our best shot at helping our children have more good days than bad ones, and to thrive by leading healthy and independent lives.
Let’s celebrate how far we’ve come and charge ahead toward a cure. Thank you for being with us. Together, we are all in.
Yours always,

Kim Nye
Founder, TESS Research Foundation
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