Be a Lifeline for Rare Disease Families

E-Newsletter - February 2026

Dear TESS Supporter,

What does it mean to be rare?

To be rare is to live in a world not built for you — and still be seen.

Rarity can mean being one in thousands, or one in millions. It can mean long diagnostic journeys, far more questions than answers, and becoming a medical expert out of necessity. It can mean explaining, advocating, educating — again and again and again.

Today on Rare Disease Day, TESS unites with people from over 100 countries to come together to raise awareness and advocate for equitable access to diagnosis, treatment, care, and social opportunities. You can join us by spreading awareness - learn more about Rare Disease Day!

Did you know…

400 million people worldwide live with a rare disease

there are approximately 10,000 different rare diseases

72% of rare diseases are genetic

70% of these genetic rare diseases begin in childhood

95% of rare diseases have no approved treatment

But being rare is not just about statistics. It is about being part of a community that refuses to be invisible. Our TESS Superheroes have a rare disease, but they are not defined by it.

What makes our Superheroes unique?

Rowan, 4, gets so excited at the sound of the blender. Scott, 29, is obsessed with Christmas. Biel, 7, loves any kind of surprise. Jaylon, 20, enjoys playing jokes on him mom. Callum, 8, can’t get enough of riding in elevators.

To be rare is to celebrate milestones others may overlook. It is to find strength in small victories and power in connection. It is families becoming fierce advocates, researchers becoming relentless allies, and supporters becoming lifelines. You are that lifeline.

"From the bottom of our hearts, thank you for never giving up on children with SLC13A5 Epilepsy. We are deeply grateful to the entire TESS community for standing with our children and our families. Knowing we have this continued support means everything".

~ Anu Vattikuti, mom to TESS Superheroes Abhi & Sanju

We know that when rare communities come together, we are anything but small. That's why we are so excited to be hosting our 9th Conference on April 30-May 1 in Menlo Park, California. Our 2026 SLC13A5 Research Roundtable will bring together scientific researchers, clinical care teams, and industry partners from around the globe. Most importantly, our conference is a rare opportunity for families affected by SLC13A5 Epilepsy to come together to connect with each other while learning from the world's most prominent experts in this rare disease.

As you know, travel these days is very expensive and so attending the conference is cost-prohibitive for many TESS families who are already dealing with years of huge medical expenses. We want to send 5 TESS families to the conference by providing them each with a $2,000 travel subsidy to offset costs. Will you help us?

SEND A FAMILY TO OUR CONFERENCE

We are incredibly grateful for your continued support in building awareness and understanding about rare disease. We simply can't do what we do for the SLC13A5 Epilepsy community without you. Remember - rare is never less. Rare is exceptional. Rare is extraordinary.

On behalf of TESS Families with gratitude,

Team 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