This is the Moment You Helped Make Possible!

E-Newsletter - July 2026

Dear TESS Supporter,

A moment our community has dreamed about for years has finally arrived: the SLC13A5 gene therapy clinical trial is now OPEN! This is far more than the launch of a clinical trial—it is a historic achievement made possible by the unwavering commitment of families, researchers, clinicians, donors, advocates, and industry partners. To everyone who believed in this vision, advanced the science, participated in our Natural History Study, and supported this journey, thank you! At the heart of this milestone are our TESS Superheroes. Their bravery inspired the research, united our community, and helped turn hope into this clinical trial. This extraordinary moment truly belongs to all of us, and together we celebrate how far we've come while looking ahead with great hope for the future.

Biohub and N=1 Collaborative

Next Steps in Interventional Genetics Workshop

From left to right: Justin West - KCNT1 Foundation, Sunitha Malepati - Buffalo Initiative, Allyson Berent - FAST, Tim Yu - Boston Children’s Hospital, Yael Weiss - Mahzi Therapeutics, Kiran Musunuru - Perelman School of Medicine, University of Pennsylvania, Kim Nye, TESS Founder & Executive Director

At the recent Biohub and N=1 Collaborative Next Steps in Interventional Genetics Workshop, TESS Research Foundation Executive Director Kim Nye joined the greatest minds in interventional genetics for rare disease. An "N=1" treatment is medication specifically developed for an individual genetic mutation.

Kim presented about the remarkable progress in SLC13A5 Epilepsy research, from virtually no research infrastructure in 2015 to a global community with a patient registry, more than $10 million in research funding, three therapeutic programs, and an FDA-approved gene therapy clinical trial in 2026. She also highlighted the critical role patient-led nonprofits play in advancing treatments for ultra-rare diseases and the need for innovative funding models to help bring promising therapies to patients.

TESS is in PEOPLE Magazine!

We have more exciting news to celebrate! PEOPLE Magazine recently featured Executive Director Kim Nye and the remarkable progress of TESS Research Foundation, highlighting how support from the Chan Zuckerberg Initiative's Rare As One program strengthened our organizational capacity and accelerated research. That work has helped bring an SLC13A5 gene therapy to clinical trial, which is a testament to the dedication of families, researchers, clinicians, and generous donors working together to advance treatments and bring hope to our entire TESS community.

June Superhero Spotlight: Bree!

Our Superhero of the Month for July is Bree! Bree has a big heart for animals and dreams of becoming a veterinarian when she grows up. She shares her home with her bearded dragon, Madame Dandelion, and her cat, Bob. When she's not caring for her pets, you'll find Bree playing basketball, swimming underwater with her goggles on, or showing off her one-of-a-kind dance moves. Known for her wonderful sense of humor, Bree loves making her family and friends laugh wherever she goes. We're so proud to celebrate Bree and the joy, kindness, and energy she brings to the TESS community! Learn more about Bree here.

TESS Highlighted by Biohub

In her recent Biohub newsletter, Dr. Priscilla Chan highlighted the power of patient-led research and recognized TESS Research Foundation as one of the Rare As One organizations that has helped launch a clinical trial. Being recognized by a global leader in biomedical innovation is such an exciting moment for our community and reflects the incredible progress only made possible because of our supporters. It's a powerful reminder that our collective efforts are helping shape the future of rare disease research.

As we celebrate this extraordinary chapter for the TESS community, we're reminded that every step forward is only possible because of the passion, resilience, and generosity of our Superheroes and their families, researchers, clinicians, donors, and supporters. Thank you for being part of this journey. Together, we're turning hope into progress—and we're just getting started.

With gratitude,

Team TESS

SUPPORT OUR CLINICAL TRIAL

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