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

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 Batul’s mom to tell us what makes Batul smile the most, here is what she had to say: Batul is excited if she has to go out to try anything new or if her friends visit her for play date! ?? #TESSResearch #SLC13A5Epilepsy #RareDisease #Epilepsy #EpilepsyAwareness #SuperheroSaturday

?? Our Bonfire campaign ends in ONE WEEK! Show some support for our 10-year anniversary by buying some TESS swag ?? https://bit.ly/4ivBJ0N ?? #TESSResearch #SLC13A5Epilepsy #RareDisease #Epilepsy #EpilepsyAwareness

?? Today is #PurpleDay! ?? Purple Day, celebrated annually on March 26th, is important for raising awareness about epilepsy. ?? In honor of Purple Day today, join us by wearing your favorite purple outfit and snapping a photo. ?? Make sure to tag @tessresearch and use #PurpleDay to show your support! ?? #TESSResearch #SLC13A5Epilepsy #RareDisease #Epilepsy #EpilepsyAwareness

It’s #TEAMTESSTUESDAY and this month we interviewed Gustavo da Costa Ferreira, PhD, a Professor at the UERJ - Federal do Rio de Janeiro. ?? ?? Q: Tell us about your work. Why did you pick this as a career? A: I am a researcher in the field of inborn errors of metabolism. It started almost by accident. When I was still an undergrad student of Pharmacy, my plan was to work temporarily on the diagnosis of these diseases to get familiar with high technology machines. I believed that would make me a strong candidate for the position that I thought I was meant for: biochemist at an antidoping lab. But I started at the Laboratory of Inborn Errors of Metabolism in April 00’ and luckily never stopped working on rare diseases. Q: How are you involved with TESS? A: My lab tries to understand the metabolic impairment leading to the symptoms in patients with SLC13A5 epilepsy. Q: Why should the work you’re doing matter to TESS families? A: I believe that understanding the causes will get us much closer to finding a cure. When the SLC13A5 transporter is not working as it should, it affects the metabolism of citrate, an important substance for the brain metabolism and function. Reestablishing its balance should dramatically impact the quality of life of patients with SLC13A5 epilepsy. Q: Why are you motivated / what inspires you to do the work you're doing? A: The pace of scientific advances is always slower than the pace needed and wished for patients and families. It is sometimes frustrating that we never know how far from the golden nugget we are, even though we are giving our best. So, we cannot do anything less than that. Q: What’s the best thing about being part of this community? A: Cooperation. Everyone is working for the same cause. Q: Have you had the opportunity to meet with any TESS families? What was that experience like? A: Last year I was fortunate in joining the SLC13A5 Research Conference & TESS Family Day, in Providence, RI. Even though this disease is very costly for patients and families (emotionally, financially, and physically), I was quite surprised that the true feelings that were filling the room were gratitude and joy. It was a life changing experience. I am writing a song for Pati (my wife and colleague) that I believe also fits perfectly for all TESS Superheroes and their families: “When I am by your side, I am always at risk of sudden life”. Q: Anything else you would like to add? A: I am grateful for being a part of this community. Thank you for being part of #TEAMTESS, Gustavo! We are so grateful for everything you do to advance SLC13A5 research! ?? #TESSResearch #SLC13A5Epilepsy #RareDisease #Epilepsy #EpilepsyAwareness

Happy Mom Mondays! ???? ?? Today we are resharing a video where Amber talks about all the equipment TESS Superhero Rowan uses to help him become physically stronger and more independent! ?? Check out this clip, and watch the full conversation on our YouTube channel ?? https://bit.ly/4hMJG0t #TESSResearch #SLC13A5Epilepsy #RareDisease #Epilepsy #EpilepsyAwareness #MomMondays

TESS Partner Resource Spotlight! ?? Understanding gene & cell therapy can feel overwhelming, but trusted resources like the American Society of Gene & Cell Therapy (ASGCT) Patient Education Portal can help! We are committed to sharing trusted, science-backed resources to help families with their scientific literacy. ???? Learn more: https://bit.ly/4hqliSd #TESSResearch #SLC13A5Epilepsy #RareDisease #Epilepsy #EpilepsyAwareness

You are invited to our 4th Annual Derby Day Fundraiser benefiting TESS Research Foundation! Join us on May 3, 2025 for heavy bites and an afternoon filled with Derby delights! ??? There will be Derby games, Surprise Boxes, a Fund-a-Future, and a live viewing of the 151st Kentucky Derby with all proceeds benefiting SLC13A5 research and family support programs. ?? ?? RVSP here: https://bit.ly/4htjU1e #TESSResearch #SLC13A5Epilepsy #RareDisease #Epilepsy #EpilepsyAwareness

Our 10-year anniversary is on April 13th! ?? Show some support by buying some TESS swag! ?? New Bonfire shirts linked here ?? https://bit.ly/4ivBJ0N #TESSResearch #SLC13A5Epilepsy #RareDisease #Epilepsy #EpilepsyAwareness

In people with seizures and neurological concerns related to citrate transporter function, such as those with SLC13A5 Epilepsy, there are changes in the building blocks that make up the transporter protein. These building blocks are called amino acids. In SLC13A5 Epilepsy, changes to these building blocks decrease the amount of citrate that is transported into the cell. More research is needed to understand why decreased citrate transport leads to seizures and other neurological issues. ???? Keep an eye out on our page for more TESS Terminology! ?? ?? #TESSResearch #SLC13A5Epilepsy #RareDisease #Epilepsy #EpilepsyAwareness #TESSTerminology