TESS Research Foundation

Oh hi, new followers! 🤗 We are thrilled to have you as part of #TeamTESS! We wanted to re-introduce ourselves & share our origin story with you all. Watch this video to learn all about the Nye family's journey which led to the creation of TESS! Watch now: buff.ly/3NaXNjl

TESS received the green light from the FDA to start a gene therapy trial for #SLC13A5Epilepsy! This is the first ever medication that addresses the underlying cause of the disorder. 🙌 Read more: bit.ly/4moTReW

Thank you @RareDiseases CEO Pamela Gavin for bringing together @MyotonicStrong, @TESSResearch, @CureCoats, and @CFRI_CureCF. Great conversations on strengthening #RareDisease and #MyotonicDystrophy advocacy and building connections to help move our communities forward!

Attention TESS community! ‼️ Save the date for our 2026 SLC13A5 Research Roundtable to be held April 30 - May 1, 2026 in the Bay Area, California. More details to come! 💜

Today is SLC13A5 Epilepsy International Awareness Day, I'm reminded in an email this morning from Kim Nye, founder of @TESSResearch Foundation. Read more here: tessresearch.org/awareness/ and …

Today on #SLC13A5Awareness Day, I will be proudly honoring our grandson, Rowan, and wearing purple to raise awareness for all families and communities affected by SLC13A5 Epilepsy. Thank you to @TESSResearch for your continued support for families like ours. #TESSResearch @SenateCA

Today on #PurpleDay, we raise awareness for epilepsy. Epilepsy is one of the most common neurological diseases globally with 65 million people around the world, including 300,000 Canadians, living with epilepsy. Today, I am wearing purple to honour my grandson, as well as every person living with epilepsy, and their families. @TESSResearch @SenateCA

On this Rare Disease Day, I urge everyone to #ShowYourStripes to raise awareness for every person, family, friend, and community impacted by rare diseases, including SLC13A5 Epilepsy. Together, we can increase visibility, advocate for more research and promote equity for all the strong and brave people living with rare diseases. #RareDiseaseDay @TESSResearch @SenateCA

I thoroughly enjoyed the opportunity to join members of the @RCofFergusElora at lunch today to hear Michael and Amber Black speak about our grandson Rowan’s journey with Slc13a5 Epilepsy and the @TESSResearch Foundation. Thanks for your rapt attention and the very thoughtful questions and comments. #CommunitySupportMatters

It's our amazing Operations Manager, Amber's birthday! 🎉 Everything you do is simply magical and our entire community is grateful for your dedication, enthusiasm, creativity, and let's-go attitude!! 🥳 May the year ahead be as fabulous as you are! 🫶 Happy birthday! 🎂 💫

#HappyBirthday to one of our best treasures here at TESS Research, Lindsay! 💜 You are creative, kind, smart, organized and light up every room you walk into.🌟 Hope this year is as special as you are. ✨ We are so grateful for all you do for TESS Research, Lindsay! 🙏

🚨 ATTN TESS Research Community! The Oxford-Harrington Disease Scholar funding call is now open 👇 Submission deadline: March 10th, 2025!

#FunFacts about our #SuperheroOfTheMonth... Ellie! She took her first independent steps in Dec! She works at the Courage Cafe & sells coffee/snacks to teachers. She is incredibly savvy with her talker! 💜 Read more: buff.ly/42hlTlk #TESSResearch #SuperheroCheckIn

Our first newsletter of 2025 will be dropping soon! 👏 📰 Sign up for our newsletter and receive information about our latest breakthroughs and upcoming events, and stories about our TESS Superheroes! 📧 💜 buff.ly/3AQHVjA #TESSResearch #SLC13A5Epilepsy #RareDisease

Happy birthday to TESS Superhero Tymek! 🎉 Wishing you a year full of happiness, laughter, and love! 💙 #HappyBirthday

Happy happy birthday to TESS Superhero Alaina! 🥳 Hoping your year is full of fun adventures, lots of hugs, and plenty of health! 🎂 #HappyBirthday

Happy birthday to sweet and happy TESS Superhero Meredith! 🎂 You are one of a kind and deserve the most magical year. 💕 #HappyBirthday

Looking to learn more about SLC13A5 Epilepsy? 🧐 🧬 Watch our short video to help you understand more about this disorder, its common symptoms, and more: buff.ly/4gEHWGW 🙌 #TESSResearch #SLC13A5Epilepsy #RareDisease #Epilepsy #EpilepsyAwareness

It's January and time to announce our #SuperheroOfTheMonth. 🦸‍♀️ We thought it would be fun to check in with our past Superheroes to see what they've been up to since we last checked in with them! 🤩 💖 This month's #SuperheroCheckIn is... Ellie! #TESSResearch #SLC13A5Epilepsy

One day late, but worth the wait! 🤗🫶 #HappyBirthday to TESS Superhero, Karim! 🎂🥳 Wishing you the healthiest and happiest year ahead. ✨

#HappyBirthday to TESS Superhero, Mohammad Hasan! 🥳 💜 We hope you have an amazing day with all your friends and family! Wishing you the best birthday ever! 🎈🎂