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

It’s #TEAMTESSTUESDAY and this month we interviewed Don Neault, a member of the TESS Board of Directors and uncle to TESS Superhero Lucas! 🙌 💟 Q: How did you get involved with TESS? A: My niece has an adopted son with SLC13A5 Epilepsy and was approached about a potential board seat. She is an extremely busy individual with 8 children and a veterinary practice and she suggested that I think about it. I did a bit of research, loved what I learned about TESS' mission, reached out to apply, and was accepted. Q: What inspires you to contribute your time and skills as a director on TESS’ board? A: I have always been one to contribute to causes that I believe in. As an executive coach, I spend a great deal of time pouring my energies into others to aid them in being their best selves. I also sit on another non-profit board where I am bringing my business experience to ensure that the organization continues to both achieve its mission and to thrive. With TESS, I hope to do more of the same while also learning about the disorder and the research. Q: What is the best thing about being part of this community? A: The best thing about being part of this community is the exposure I get to the strength and resilience of the families and their family members with SLC13A5 Epilepsy. There is no quit in them - they are so inspirational! Q: How can others help make a difference for children and families with SLC13A5 Epilepsy? A: Start with learning about SLC13A5 Epilepsy and the challenges it presents affected children and their families. From there, you cannot help but donate to research and TESS programs that support the families. Every donation, large or small, matters and helps us get closer to finding treatments and, we hope, a cure for SLC13A5 Epilepsy. Thank you for being part of #TEAMTESS, Don! We are so grateful for everything you do for our TESS Superheroes! 💜 #TESSResearch #SLC13A5Epilepsy #RareDisease #Epilepsy #EpilepsyAwareness

👩🔬 This month we are re-sharing a #ScienceSimplified that explains what what gene therapy is and why gene therapies may be a good option for diseases like SLC13A5 Epilepsy. 🔬 🧬 Read now: https://bit.ly/3C2pSXA #TESSResearch #SLC13A5Epilepsy #RareDisease #Epilepsy #EpilepsyAwareness

It's time for this month's #SaturdayStory! 🌟 Clinical research helps our community understand the many different facets of SLC13A5 Epilepsy and what the disorder looks like over time. 🧬 This month, we are so excited to hear from Rayann Madrilejo Solidum, a Clinical Research Coordinator Associate at Stanford! Rayann helps Dr. Brenda Porter run our Natural History Study 👏 Read her interview here: https://bit.ly/3AedsLN #TESSResearch #SLC13A5Epilepsy #RareDisease #Epilepsy #EpilepsyAwareness

🎉 HUGE NEWS: SLC13A5 Epilepsy has an ICD-10 Code! 🎉 Tell your care team to start using it today! ✨ We are thrilled to announce that after a lot of hard work by our Scientific Director, Dr. Tanya Brown, we were granted an ICD-10 code! 🙌 Our new code, E74.820, for SLC13A5 Citrate Transporter Disorder (SLC13A5 Epilepsy), is ready to use now! International Classification of Disease (ICD) codes help doctors identify a disease affecting a patient, enable insurance providers to determine reimbursements for medications, and help researchers study diseases. Most rare diseases do not have an ICD code. We are so proud to have an ICD-10 Code for SLC13A5 Epilepsy! 💪 💜 #TESSResearch #SLC13A5Epilepsy #RareDisease #Epilepsy #EpilepsyAwareness #ICD10 #ICDCodes

Happy Mom Mondays! 💞☕️ 🫶 This month Amber and Nicole talk about how they make community events, like Halloween, successful for their TESS Superheroes. Check it out now! 💜 #TESSResearch #SLC13A5Epilepsy #RareDisease #Epilepsy #EpilepsyAwareness #MomMondays

🗣️ We have compiled resources about SLC13A5 Epilepsy and related topics so you have information and support at your fingertips! 💟 Check out our resource library, which includes many educational videos, now: https://bit.ly/3SzlsfN #TESSResearch #SLC13A5Epilepsy #RareDisease #Epilepsy #EpilepsyAwareness

Does your company or place of employment offer charitable grants, encourage non-profit story sharing, or have an employee giving program? We'd love for TESS Research Foundation to be considered! 🫶 Contact lindsay@tessfoundation.org to brainstorm how we can work together (one idea: let's coordinate a dine-out fundraiser with a restaurant for your next all-employee lunch or meeting)! Thank you for all the ways you support TESS! 💜 #TESSResearch #SLC13A5Epilepsy #RareDisease #Epilepsy #EpilepsyAwareness

🚨 Funding Alert 🚨 The American Epilepsy Society (AES) is one of the largest non-governmental funding sources for individuals starting careers in epilepsy research 🔬 and is committed to developing the next generation of epilepsy investigators. TESS Research Foundation is a contributing partner and with AES, will consider co-funding an Early Career Research Grant. 💰 Application deadline is January 16, 2025; more information ➡️ https://bit.ly/4f2hc1X #TESSResearch #SLC13A5Epilepsy #RareDisease #Epilepsy #EpilepsyAwareness

🚨 October 16 is SUDEP Action Day! 🚨 Join us in raising awareness about Sudden Unexpected Death in Epilepsy (SUDEP) and epilepsy risk. This year’s theme is #OurRisksOurRights, which focuses on the right we all have to life-saving information and empowers individuals and families to have important conversations about SUDEP risk. We also stand with bereaved families as they seek answers and support. Together, let's prioritize safety and continue having conversations about SUDEP. 💜 Learn more: https://bit.ly/4dG8vJA #TESSResearch #SLC13A5Epilepsy #RareDisease #Epilepsy #EpilepsyAwareness #SUDEPActionDay2024