TESS Research Foundation

Oh hi, new followers! ?? We are thrilled to have you as part of #TeamTESS! We wanted to re-introduce ourselves and 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 Research Foundation. ?????? #TESSResearch #SLC13A5Epilepsy #RareDisease #Epilepsy #EpilepsyAwareness

We know there are many surveys circulating for our families to complete to help with research initiatives in the rare disease space. These surveys are important for learning more about rare disease and the impact it can have on our families. ?? ?? ?? We understand that survey fatigue is real but that families may still want to help. To avoid overwhelming you with survey requests, we are housing our partner’s surveys on our website ?? https://bit.ly/3DOxmim *These surveys are not created by or associated with TESS Research Foundation* #TESSResearch #SLC13A5Epilepsy #RareDisease #Epilepsy #EpilepsyAwareness

We’re feeling lucky for our amazing #TEAMTESS community! #HappyStPatricksDay ?????? #TESSResearch #SLC13A5Epilepsy #RareDisease #Epilepsy #EpilepsyAwareness

It’s our 10-year anniversary! ?? Show some support by buying some TESS swag! ?? New Bonfire shirts linked here ?? https://bit.ly/4ivBJ0N #TESSResearch #SLC13A5Epilepsy #RareDisease #Epilepsy #EpilepsyAwareness

?? The countdown is on! Just ONE month away for our TESS ten year anniversary! ????

#TeamTESS has already been so busy in 2025! ?? Here’s a glimpse into what we’ve been up to: ?? January: Amber Black, Director of Operations, attended the Rare Advocate Development Workshop, hosted by Rare Epilepsy Network (REN), Mahzi Therapeutics, and Global Genes, to learn more about drug development. ?? February: Tanya L Brown, PhD, Scientific Director, represented TESS at Pacific Northwest Research Institute's Rare Disease Day Symposium, connecting with researchers, clinicians, and advocates at Seattle Children's Research Institute. ?? March: Kimberly Lodato Nye, Founder & Executive Director, spoke at the Charles River Laboratories 2025 Cell & Gene Therapy Summit, sharing her journey leading TESS and the importance of patient-driven research. We are grateful for these opportunities to learn, connect, and raise awareness for SLC13A5 Epilepsy! #TESSResearch #SLC13A5Epilepsy #RareDisease #Epilepsy #EpilepsyAwareness

Research Update! ?? Naomi Dirckx, PhD, recipient of the CURE Epilepsy Rare Epilepsy Partnership Award and the Stevens Family Scholar in SLC13A5 Research, shares an update on her project. ?? Dr. Dirckx is investigating how SLC13A5 mutations affect metabolic processes in the brain. ???? Key findings so far: ? During the first half year of this grant we have focused on the metabolic changes that are happening inside the brains of control and Slc13a5 deficient mice as a model for patients with SLC13A5 epilepsy. ? Data from this experiment showed that crucial neuronal and astrocytic metabolites were significantly altered in the Slc13a5 deficient mouse brains. We even observed a significant decrease in in the ratio of inhibitory over excitatory neurotransmitters, which could contribute to hyperexcitability of neurons, a key characteristic of epileptic activity. ?? Read the full public statement here: https://bit.ly/4hUku9b #TESSResearch #SLC13A5Epilepsy #RareDisease #Epilepsy #EpilepsyAwareness

Missed our most recent newsletter? ?? Sign up now to receive information about our latest breakthroughs, upcoming events, and stories about our TESS Superheroes straight to your inbox! ?? https://bit.ly/3ubCbcM #TESSResearch #SLC13A5Epilepsy #RareDisease #Epilepsy #EpilepsyAwareness

What do the clinical symptoms of SLC13A5 Epilepsy look like? ?? How do you confirm SLC13A5 Epilepsy with genetic testing? ?? You can find the answer to these questions on our website! ?? Learn more: https://bit.ly/41qwtV7 #TESSResearch #SLC13A5Epilepsy #RareDisease #Epilepsy #EpilepsyAwareness

Genetic testing can be helpful in determining the care that your child needs. ?? Probably Genetic has a no-cost genetic testing program for individuals experiencing pediatric-onset seizures or developmental delay. ?? Read more and determine eligibility here: https://bit.ly/3XmTXci #TESSResearch #SLC13A5Epilepsy #RareDisease #Epilepsy #EpilepsyAwareness #GeneticTesting #ProbablyGenetic