E-Newsletter - March 2026 | | |
Dear TESS Supporter,
TESS welcomed the arrival of March as a time of renewal, growth, and fresh momentum. As we slide into the spring season, like Superhero Eva Maria (pictured above), we’re so excited to share so many updates, highlights, and upcoming events from across our community. Read ahead and you’ll discover the immediate impact our latest research publication is having on TESS families, our recent initiatives with ASGCT, and what's happening next for TESS. Between our SLC13A5 Research Roundtable and our 5th Annual Derby Day fundraiser, there is just so much to look forward to this Spring!
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SLC13A5 Research Roundtable
April 30 - May 1
| | We are so excited to be hosting our TESS community at our 2026 Conference! TESS Superheroes, families, researchers, clinicians, care teams, government, and industry partners will all come together to engage in patient-centered research. Register here. | Celebrating Our 5th Annual Derby Day! | |
Join us on May 2, 2026 at Sharon Heights Golf & Country Club for our 5th Annual Derby Day!
Get ready for fancy hats, fast horses, and big wins for TESS!
Don't miss the event of the season! Purchase your tickets today!
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Partnership Spotlight:
The American Society of Gene + Cell Therapy
TESS is proud to be an active member of many leading health and scientific organizations across the country and around the globe. One of our most significant partnerships is with the American Society of Gene + Cell Therapy. ASGCT is the leading professional organization for the advancement of cell and gene therapies. Members are a diverse community of scientists, physicians, patient advocates, and industry professionals dedicated to turning groundbreaking research into life-changing treatments.
TESS Founder & Executive Director Kim Nye has been especially active with ASGCT these past few weeks. Here is what Kim has been up to!
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Empowering Patients 2026: A Cell and Gene Therapies Summit
Kim was invited to participate in the virtual ASGCT Empowering Patients 2026 Summit on March 11–12 as a panelist on how patient groups drive drug development. Drawing on TESS’ experience, she emphasized resilience, collaboration, and navigating complex challenges to advance gene therapies from research to clinical trials.
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Interview: Community Quick Takes:
Genetic Reports + What’s Next
As a parent advocate, Kim joined genetic counselor Dr. Lauren Beretich to explain genetic reports and how they guide families’ next steps. Since test results often bring questions, emotions, and unfamiliar terms, watch their interview to learn more.
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Article in the ASGCT Inside Member Spotlight: Kim Nye
In this article, Kim explains how TESS bridges the gap between families and researchers, why honesty is the foundation of trust, and what it truly takes for a patient group to "take the wheel" on a clinical program. This publication has a readership of 20,000+ people, which is an amazing recognition opportunity for TESS. Read the article here.
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MARCH TESS SUPERHERO:
Meet Liliana!
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Our TESS Superhero of the month is Liliana! She is a cheerful 3 year-old who loves music and spending time with animals. Liliana lives in Poland with her mom, dad, and older brother who has Down Syndrome. Read here about what Liliana's mom shared about her medical journey.
Thank you so much to Liliana and her family for sharing their experience!
| CLINICAL TRIAL UPDATE: We are on the verge of opening enrollment for our gene therapy clinical trial! TESS families should continue to check their email and our website for further updates. |
NEW Publication: SLC13A5 citrate transporter disorder epilepsy phenotype
| Our latest publication from the SLC13A5 Epilepsy natural history study is now available and it’s already having an impact! Part of this peer-reviewed publication includes anti-seizure medications, doses, and whether families think they are effective. It’s a tool that families are bringing to their clinical teams, and TESS is also sharing it with the FDA and our research community. Thank you to our research teams, our many TESS families who participated, and our generous donors who made this possible! Read the paper here. | |
Thank you for being a valued part of the TESS community. Your ongoing support, engagement, and advocacy help move this work forward and bring us closer to meaningful treatments for our TESS Superheroes. None of this is possible without you.
We’re so grateful to have you alongside us on this journey and can't wait to share more exciting news with you next month!
Happy Spring!
TEAM TESS
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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.
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TESS Research Foundation is a 501(c)(3) tax-exempt public charity.
Tax ID 47-3108868
| | Copyright © 2026 TESS Research Foundation, All rights reserved. | | | | |
