🙌 High Five from TESS!

E-Newsletter - October 2025

Dear TESS Friends,

Happy October! This is a busy and exciting time for our SLC13A5 Epilepsy community.

Here are some fast highlights (scroll for more details):

TESS Research Foundation was approved for a PCORI® Engagement Award. You can learn more here!
Save the date for our 2026 SLC13A5 Research Roundtable, held April 30-May 1, 2026 in the Bay Area, California.
Read a new SLC13A5 publication that explores how researchers studied and tested citrate transport in several SLC13A5 variants of uncertain significance (VUS).
Read our latest Science Simplified which breaks down mRNA.
Learn all about our TESS Superhero of the Month... Biel!

And in case you missed it, in our last newsletter we shared our biggest news yet about TESS Research Foundation receiving approval from the FDA to start a gene therapy clinical trial for SLC13A5 Epilepsy. TESS Research Foundation is the sponsor of this trial which will begin in early 2026. Our community efforts over the last ten years have led to this moment and it is only possible because of YOU.

It's been an amazing year so far for our community and we cannot wait to see what the last few months of 2025 have in store.

Warmly,

Amber Black

Director of Operations

Mom to TESS Superhero Rowan

TESS Approved for PCORI® Engagement Award

We’re pleased to announce that TESS Research Foundation has been selected for Patient-Centered Outcomes Research Institute (PCORI®) funding through its Eugene Washington PCORI® Engagement Award Program.

Co-led by TESS Scientific Director, Dr. Tanya Brown, and Executive Director, Kim Nye, this project will help develop a skilled community of patients, caregivers, clinicians and other stakeholders who are better equipped to engage as partners in all phases of patient-centered research.

Read more about the award here.

Save the Date: 2026 SLC13A5 Research Roundtable

Save the date for our 2026 SLC13A5 Research Roundtable to be held April 30 - May 1, 2026 in the Bay Area, California. More details to come!

New SLC13A5 Epilepsy Publication

The recently published study by Wang et al. mapped out the effects of nearly 90% of all missense mutations that can lead to SLC13A5 Epilepsy. Using powerful tools like deep mutational scanning and a citrate biosensor, the team created a valuable resource that can help understand how different changes affect SLC13A5 affect citrate transport - an important step in understanding SLC13A5 Epilepsy.

Most meaningfully for the SLC13A5 family community, they studied and tested citrate transport in several SLC13A5 variants of uncertain significance (VUS), revealing how these specific changes cause the disorder.

This research marks a major step toward uncovering the science behind SLC13A5 Epilepsy and finding ways to help our TESS Superheroes.

Read the paper here.

Science Simplified

Our latest Science Simplified explores what the role of mRNA in the cell is, why it is important, and how scientists use it for disease-relevant research and therapeutics.

Read the latest article authored by Katya Khalizeva, PhD Candidate in Biology at the Massachusetts Institute of Technology (MIT).

TESS Superhero Check In: Biel

Biel is our TESS Superhero of the month! Biel is 7 and lives in Spain. We thought it would be fun to check in with him to see what he's been up to since he was first featured in November 2022.

Learn about Biel here.

Meet More TESS Superheroes

Callum was our September 2025 Superhero of the Month!

Learn more about Callum here.

Dawood was our August 2025 Superhero of the Month!

Learn more about Dawood here.

Callum was our July

2025 Superhero of the Month!

Learn more about Callum here.

In Case You Missed It

Saturday Story:
Angela and Rowan

Stories from members of the TESS community aim to give our followers a glimpse of what it might be like to love and care for someone with SLC13A5 Epilepsy.

Last year we highlighted Angela and Rowan's journey in our Saturday Story feature.

Read the full interview.

TESS Terminology:

Target Enabling Package

Our TESS Terminology feature breaks down one scientific term at a time in quick videos to help make science accessible for our community and the broader rare disease space.

Watch the video to learn how a Target Enabling Package, a peer-reviewed research toolkit, applies to SLC13A5 Epilepsy research!

Team TESS at

COMBINEDBrain Summit

Last month, TESS attended the COMBINEDBrain Annual Summit in Nashville.

Kim Nye, TESS Executive Director & Founder and COMBINEDBrain Co-Vice Chair, gave the State of Consortium Address alongside Sunitha Malepati, Vice President of CACNA1A Foundation and COMBINEDBrain Secretary.

Give Now

Help support TESS research, outreach, and community. Make a donation today.

Connect with us

Visit our website

TESS Research Foundation drives cutting-edge research to diagnose, treat, and ultimately cure SLC13A5 Epilepsy, while providing support for affected children and their families.

We will have succeeded when all children with SLC13A5 Epilepsy

lead healthy and independent lives.

TESS Research Foundation is a 501(c)(3) tax-exempt public charity.

Tax ID 47-3108868