Derby Day 2022

Derby Day 2022

What do you get when you bring together mint juleps, fancy hats and bowties, a live viewing of the Kentucky Derby, and a garden full of people who want to make a difference in the lives of children and families affected by SLC13A5 Epilepsy? TESS Research Foundation’s inaugural Derby Day fundraiser!

Held on May 7 in the beautiful garden of Celeste and Dennis McDonnell, Derby guests were treated to southern delights and sweet treats; a jazz band; a screening of our latest video, and a live viewing of the 2022 Kentucky Derby. Among the speakers were TESS founder and president Kim Nye; TESS scientific director Dr. Tanya Brown; Dr. Brenda Porter, pediatric neurologist at Stanford, chair of the TESS Scientific Advisory Board, and lead of our Natural History Study; and Dr. Rachel Bailey from UT Southwestern, who developed a gene therapy for SLC13A5 Deficiency!

The highlight was when Lily Nye, sister to Tessa, Maggie, and Colton, offered her perspective as a sister to her two siblings with SLC13A5 Epilepsy. Lily shared, “Tessa is my biggest role model and inspiration. I cannot imagine what it would be like to be in her shoes; completely out of control of her own body. From the time we were little, Tessa and I have always been two peas in a pod… she will forever be my best friend.”

Through our Derby Game and incredible generosity during our Fund-a-Future paddle raise, we raised more than $136,000 for research and family support. We are deeply grateful for every single donation, which collectively will drive research and our understanding of SLC13A5, and provide financial support for families participating in our SLC13A5 Epilepsy Natural History Study. Thank you for funding the science that will change lives!

The spirit of the day was captured here. Thank you to everyone who attended, who donated online, helped spread the word about SLC13A5 Epilepsy, and made the event a great success! See you at our second annual Derby Day – May 6, 2023!