TESS Research Foundation for Slc13a5 Epilepsy

TESS Research Foundation for Slc13a5 Epilepsy TESS Research Foundation is a 501(c)(3) nonprofit organization determined to help families affected by SLC13A5 Epilepsy (a Citrate Transporter Disorder).

TESS Research Foundation, a 501(c)(3) tax exempt public charity, is determined to improve the lives of those affected by SLC13A5 Epilepsy (Citrate Transporter Disorder). We do this by funding research, spreading awareness, and supporting children with SLC13A5 Epilepsy and their families. Since 2015, we have gone from identifying the gene responsible for SLC13A5 Epilepsy to receiving FDA approval t

o start a gene therapy clinical trial in 2026. We have awarded more than $2 million in research grants and are connecting a global community of scientists. We do this across countries because SLC13A5 Epilepsy does not know geographic boundaries. We do this collaboratively because it takes a team to improve treatments and find a cure. We do this with urgency because our loved ones are sick now. We will have succeeded when all children with SLC13A5 Epilepsy can lead healthy and independent lives.

Happy birthday to TESS Suphero Abhi! 🎂 🎈 May this birthday fill you with so much laughter and love. 💜❤️ Here is a spec...
06/06/2026

Happy birthday to TESS Suphero Abhi! 🎂 🎈 May this birthday fill you with so much laughter and love. 💜❤️

Here is a special birthday message from Abhi's family:

Happy 19th Birthday, Abhi! 🎂
Wishing you lots of happiness, good memories, and exciting opportunities this year. Enjoy your special day.
Love 🥰 you always!

👀 : TESS Founder & Executive Director was featured in ASGCT Insider! 🤩 In this article, Kim explains how TESS bridges t...
06/05/2026

👀 : TESS Founder & Executive Director was featured in ASGCT Insider! 🤩

In this article, Kim explains how TESS bridges the gap between families and researchers, why honesty is the foundation of trust, and what it truly takes for a patient group to "take the wheel" on a clinical program. This publication has a readership of 20,000+ people, which is an amazing recognition opportunity for TESS. 🙌

Read it today: https://bit.ly/4uRreeu 💜

American Society of Gene & Cell Therapy

Happy birthday to TESS Superhero Rowan! 🎂 You light up every room, and we hope you have the best birthday! 🎉 We all 💜 yo...
06/04/2026

Happy birthday to TESS Superhero Rowan! 🎂 You light up every room, and we hope you have the best birthday! 🎉 We all 💜 you so much!

We are thrilled to announce that TESS Research Foundation was awarded a $75,000 grant through the RTW Foundation's Rare ...
06/03/2026

We are thrilled to announce that TESS Research Foundation was awarded a $75,000 grant through the RTW Foundation's Rare Disease Advisory Program (RDAP)! 👏 TESS will use this grant to support assay development for SLC13A5 by Dr. David Sauer from the University of Oxford. Dr. Sauer is developing a screening assay to test and identify potential treatments for SLC13A5 Epilepsy, a critical need for our community. 🔬

Beyond funding, RDAP works closely with each organization, providing free scientific and strategic advising to help foundations evaluate research priorities, therapeutic opportunities, and next steps. 💜

We are so grateful to be a 2026 RTW Spring Rare Disease Grant Partner! 🙏

Happy happy birthday to TESS Supehero Ellie! 🧁 🎊 We hope this year is as special as you are! 💜💗
06/02/2026

Happy happy birthday to TESS Supehero Ellie! 🧁 🎊 We hope this year is as special as you are! 💜💗

It's June and time for our new feature: 🦸 This month's superhero is... Eva Maria! 🤩 💜 Eva Maria is an adventurous free...
06/01/2026

It's June and time for our new feature: 🦸 This month's superhero is... Eva Maria! 🤩 💜

Eva Maria is an adventurous free spirit who loves to stay active! 🤸‍♀️ Here she is out for a bike ride on a beautiful sunny day! 🚴‍♀️

Our latest outlines the role of citrate and neurotransmitter imbalances in SLC13A5 Epilepsy. Understanding how citrate...
05/31/2026

Our latest outlines the role of citrate and neurotransmitter imbalances in SLC13A5 Epilepsy. Understanding how citrate and neurotransmitter imbalance are linked gives families and doctors important insight and may lead to different treatment approaches. 🧠

Learn more now: https://bit.ly/49wTR85

This article was written by TESS intern, Sarah Gann, who studies biomedical sciences with a focus on humanistic medicine and patient advocacy at the University of Notre Dame. 💜

Happy birthday to TESS Superhero Jaylon! 🎂 Wishing you a healthy and happy year ahead! 🎉
05/30/2026

Happy birthday to TESS Superhero Jaylon! 🎂 Wishing you a healthy and happy year ahead! 🎉

Happy Birthday to TESS Superhero Halldóra! 🎈💟 May this birthday be your best one yet! 🎂🎉
05/29/2026

Happy Birthday to TESS Superhero Halldóra! 🎈💟 May this birthday be your best one yet! 🎂🎉

We know that the movement disorder in SLC13A5 Epilepsy is an important symptom to address for our TESS Superheroes.🏃‍♀️‍...
05/24/2026

We know that the movement disorder in SLC13A5 Epilepsy is an important symptom to address for our TESS Superheroes.🏃‍♀️‍➡️🧑‍🦽‍➡️

A new study was published that assessed disorders that have both epilepsy AND a movement disorder - including SLC13A5 Epilepsy. Using information from 609 patients, investigators found that there is a broad range of symptoms across these disorders and that SLC13A5 Epilepsy was included in a group that often requires intensive care for movement. 💜

Read the paper now: https://bit.ly/4f39xni

Address

PO Box 53
Menlo Park, CA
94026

Opening Hours

Monday 9am - 5pm
Tuesday 9am - 5pm
Wednesday 9am - 5pm
Thursday 9am - 5pm
Friday 9am - 5pm
Saturday 10am - 5pm
Sunday 9am - 5pm

Telephone

(650) 521-2279

Website

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