E-Newsletter

June 2025

Dear TESS Friends,

We are back with our high-five newsletter after taking a couple of side quests in April and May! Our last two issues celebrated our 10-year anniversary and SLC13A5 Epilepsy International Awareness Day respectively. We are excited to catch you up on what we've been up to in between these big moments.

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



• We raised over $250,000 at our 4th Annual Derby Day Fundraiser! This was our most successful year yet thanks to all of you.
• We anticipate SLC13A5 Epilepsy clinical trials to start in 2025. TESS will be communicating updates about this through our Patient Registry. Make sure you have registered your loved one to receive these communications.
• Team TESS presented at the American Society for Cell and Gene Therapy and Chan Zuckerberg Initiative annual meetings. Here are some photos!
• The latest Science Simplified breaks down the scientific method.
• Our TESS Superhero of the Month is... Rowan!

Looking forward to sharing more exciting updates in July!

Warmly,

Amber Black

Director of Operations

Mom to TESS Superhero Rowan

Our incredible community donated more than $250,000 at our Fourth Annual Derby Day fundraiser, held on May 3rd! We are so grateful for this love and support. You are playing a key role in helping us move our gene therapy program forward, including getting TESS a step closer to dosing our first SLC13A5 Superhero. Thank you from everyone on Team TESS! We could not do this without you.

Read all about our event!

We anticipate SLC13A5 Epilepsy clinical trials to start in 2025. TESS will be communicating updates about this through our Patient Registry. Make sure you have registered your loved one to receive these communications. Our Registry collects basic information including your loved one’s diagnosis (verified through a genetic report), age, gender, and geography. The Registry needs to be consented to by a parent or legal guardian. Participation is voluntary. 

Click here to read the consent form and join the Registry.

If you are unsure if your loved one’s genetic report is in the Registry or of you have any questions please contact info@tessfoundation.org

Last month our Founder & Executive Director, Kim Nye, co-chaired and spoke at the American Society of Gene & Cell Therapy's Business of Advocates Advancing CGTs workshop. Our Scientific Director, Dr. Tanya Brown, presented at the Chan Zuckerberg Initiative's Rare As One Network Meeting. Our Scientific Advisory Board member, Dr. Matthew Bainbridge, also represented TESS alongside Dr. Brown at the CZI meeting!

We are always grateful for the opportunity to represent TESS Research Foundation and connect with other patient advocacy groups.

Check out our social media for more photos!

Our latest Science Simplified breaks down the scientific method, a multi-step process used to explore scientific questions and find answers. In this post, Dr. Kaitlin Alemany, who received her PhD in Cell Biology, Stem Cells, and Development at the University of Colorado Anschutz Medical Campus, explains the 8 important steps to the scientific method and provides a real-life example on how it is used in SLC13A5 research.

Read it now.

Rowan is our TESS Superhero of the month! Rowan is 4 and lives in Canada. 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 February 2022.

Learn about Rowan here.

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

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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

Copyright © 2025 TESS Research Foundation, All rights reserved.