Dear TESS Supporters,
As summer draws to a close, and kids head back to school, I am reminded of how hard Back-to-School Night can be for families of children affected by SLC13A5 Epilepsy.
Our children require extra supports in school. From walkers and wheelchairs to special education classes and adapted curriculums, the list of differences between our children and a typical child can be overwhelming. Back-to-School Night is supposed to be an exciting night of new beginnings. Candidly, for me it serves as a reminder of how far behind my 8-year-old son Colton is compared to his peers. And it breaks my heart that for my daughter Tessa, now a senior in high school, her Back-to-School Night will focus on conservatorship instead of college.
This is the experience that drives me to work tirelessly to help change the outcomes for my kids and others who will be diagnosed with SLC13A5 Epilepsy. New treatments are progressing, we are raising awareness about important scientific breakthroughs, and our TESS families around the world are united by a common cause. If, like me, the tradition of back to school is tinged with a little grief, I want to send a message of love and support to you. While our children's education has not been a straightforward path, we are together building a brighter future for our children.
Read on for 5 ways to get engaged, informed, and inspired about SLC13A5 Epilepsy as we head into fall. Stay tuned next month for a big research collaboration announcement!
With gratitude,
Kim Lodato Nye
Founder, TESS Research Foundation
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