You Powered Record-Breaking Progress in 2025!

E-Newsletter - January 2026

tessresearch.org

We hope that your 2026 is off to a wonderful start, loyal TESS Supporter! Here at TESS, we are so excited about the year ahead, but before we look forward, we must reflect back with gratitude.

We are deeply grateful for the incredible support you showed us all year long—from Rare Disease Day to Derby Day, Epilepsy Awareness Month to Giving Tuesday, and right through to the final hours of the year, with donations arriving on December 31st. You’ve truly been by our side every step of the way.

2025 was a landmark year for TESS, most notably receiving FDA approval to launch the world’s first gene therapy clinical trial aimed at treating SLC13A5 Epilepsy.

Together, we achieved so many record achievements. Look what you made possible!

2025 Top 5 Milestones

Celebrated TESS Research Foundation's 10th Anniversary

Received FDA approval to launch a clinical trial for the first gene therapy drug for SLC13A5 Epilepsy

Funded $386,561 of SLC13A5 research

Welcomed 128 NEW donors

Raised a record $350,737 during our year-end campaign

So what does 2026 have in store for TESS? We are dedicated to continuing moving forward with our clinical trial. We must continue to raise funds to cover the expanding costs, but we are determined that we will see the first patient dosed in the coming months. Alongside the clinical trial, we will keep partnering with exceptional researchers and pushing forward scientific questions that will continue to unlock answers for this devastating disorder.

As always, we remain committed to providing support to our TESS Superheroes and their families as they navigate the many challenges, obstacles, and unpredictability of SLC13A5 Epilepsy.

This year, we will be bold, we will be innovative, we will continue to push treatment development forward. We cannot stop, we will not stop until we find treatments and ultimately a cure for SLC13A5 Epilepsy. Our TESS Superheroes deserve nothing less.

Together we will make history.

We are so thankful to have you with us on this journey.

With gratitude,

Kirsten Cooney

TESS Development Coordinator

PS. Save the date for our 5th Annual Derby Day Fundraiser on May 2nd!

SUPPORT TESS

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