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

During #EpilepsyAwarenessMonth, we are highlighting key symptoms of SLC13A5 Epilepsy, including movement challenges, communication difficulties, and seizures. But did you know that SLC13A5 Epilepsy affects even more areas of the body? ?? Affected individuals also experience developmental delays, tooth abnormalities, sleep disturbances, and fine motor skill difficulties. ?? ?? ?? ?? As a result of all these symptoms, our TESS Superheroes need 24/7 care. ?? #TESSResearch #SLC13A5Epilepsy #RareDisease #Epilepsy #EpilepsyAwareness #EpilepsyAwarenessMonth #FactFriday

Our TESS Superheroes are the heart of TESS Research Foundation and we love hearing what families have to say about them! We asked TESS Superhero Lucas’s mom to share something special about him and here is what she had to say: Lucas could teach the world about joy. Lucas always finds joy in the simplest of things. Songs are his favorite and a hello from anyone brings a smile to his face. #TESSResearch #SLC13A5Epilepsy #RareDisease #Epilepsy #EpilepsyAwareness #EpilepsyAwarenessMonth #SuperheroSaturday

Early Bird Black Friday Sale! ?? Get your hands on our new I ?? TESS merch and save 13% when you use code TESS2024 at checkout. ?? Sale runs from Nov 22 - Dec 6, so don’t miss out! ?? You can order TESS merch on Bonfire and support SLC13A5 Epilepsy research: https://bit.ly/3LwQVJE #TESSResearch #SLC13A5Epilepsy #RareDisease #Epilepsy #EpilepsyAwareness #EpilepsyAwarenessMonth #BlackFriday

Did you know that the same treatment doesn’t work for everyone with epilepsy? Many, including our TESS Superheroes, face uncontrolled epilepsy. ?? Some tips for managing epilepsy, in addition to taking prescribed anti-seizure medication on time, include: - getting a good night's sleep ?? - exercising regularly ??? - eating a well-balanced diet ?? - practicing ways to reduce stress ?? People with uncontrolled epilepsy might be doing everything they can to manage their epilepsy and still have seizures. There is an urgent need for more research and better treatments! ?? #TESSResearch #SLC13A5Epilepsy #RareDisease #Epilepsy #EpilepsyAwareness #EpilepsyAwarenessMonth #FactFriday

It's #ThankYouThursday! ? Our Board Vice Chair, Michael Black, is sending a HUGE thank you to our Board of Directors! ?? Our Board works tirelessly to improve the lives of our TESS Superheroes and their impact is felt every day! ?? #TESSResearch #SLC13A5Epilepsy #RareDisease #Epilepsy #EpilepsyAwareness #EpilepsyAwarenessMonth

We are honored to announce that we have been chosen as a 2024 charity partner for TP ICAP's Charity Day at their Amsterdam location! ?? Funding from ICAP Charity Day will help fund research at the University of Oxford that aims to create targeted tools to identify the root causes of SLC13A5 Epilepsy and to provide new opportunities for treatments and therapies. ?? Check out our charity page on the ICAP website: https://bit.ly/3YSdJfH ?? #TESSResearch #SLC13A5Epilepsy #RareDisease #Epilepsy #EpilepsyAwareness #EpilepsyAwarenessMonth #ICAPCharityDay #WeAreCharityDay

Spotted at the Ultragenyx RARE Bootcamp last week - TESS Scientific Director, Tanya L Brown, PhD, with Sunitha Malepati from CACNA1A Foundation and Virginie McNamar from SynGAP Research Fund (SRF) for SYNGAP1-Related Disorders ?? The RARE Bootcamp is designed for patients and advocates who have started funding rare disease research and are looking to better coordinate and build structure around their efforts. We were so grateful for the opportunity to attend! ?? #TESSResearch #SLC13A5Epilepsy #RareDisease #Epilepsy #EpilepsyAwareness #EpilepsyAwarenessMonth

A Target Enabling Package (TEP) is a peer-reviewed toolkit that scientists use to study a specific protein linked to a disease-related gene, like SLC13A5. TEPs include resources scientists might need to study this protein or gene, such as screening platforms, lab tests, and information about the protein's structure. By using TEPs, scientists can begin to understand the disease process and identify potential treatments faster. In SLC13A5 Epilepsy research, TEPs could help us understand citrate in health and disease, as well as develop screening tests to identify new small molecules that address citrate transport. Stay tuned for how TEPs can be used in SLC13A5 Epilepsy research to drive drug discovery! ?? #TESSResearch #SLC13A5Epilepsy #RareDisease #Epilepsy #EpilepsyAwareness #EpilepsyAwarenessMonth #TESSTerminology

Happy Mom Mondays! ???? ?? This week, Amber and Nicole share how they communicate with their TESS Superheroes. Check out this clip, and watch the full conversation on our YouTube channel ?? https://bit.ly/3AKF1N3 #TESSResearch #SLC13A5Epilepsy #RareDisease #Epilepsy #EpilepsyAwareness #EpilepsyAwarenessMonth #MomMondays