E-Newsletter - June 2026 | | |
Dear TESS Supporter,
What a spring it's been! May and June have brought exciting events, meaningful connections, and plenty of reasons to celebrate throughout the TESS community. From the energy and impact of Derby Day, to the valuable insights and meaningful moments shared at our Research Roundtable, and the latest innovations showcased at the ASGCT Annual Meeting, our team has been actively engaging, growing, and representing TESS. This month, we also shine a spotlight on our Superhero Eva Maria and Intern Sarah Gann and the contributions she’s made to our team. Thank you to our dedicated supporters for making these stories, achievements, and community connections possible!
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5th Annual Derby Day -
Sharon Heights Golf & Country Club
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What an extraordinary afternoon we shared at our 5th Annual Derby Day on May 2nd! Thanks to the incredible generosity of our donors, sponsors, volunteers, and guests, this year was our most successful fundraiser ever, raising more than $625,000 to support our SLC13A5 Epilepsy gene therapy clinical trial and bring new hope to affected children and families. The event was a powerful celebration of community, progress, and purpose. Discover more about Derby Day here.
SAVE THE DATE for Derby Day 2027 on May 1st!
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2026 Research Roundtable -
Menlo Park, California
| From April 30th - May 1st, TESS Research Foundation welcomed families, researchers, clinicians, and industry partners to our 2026 SLC13A5 Research Roundtable. Over these two special days, our community united to share experiences, learn about the latest research and clinical advances, and discuss the needs of people living with SLC13A5 Epilepsy. From progress in earlier diagnosis and clinical trials to ongoing efforts to better understand the disease across the lifespan, every conversation centered on improving the lives of our TESS Superheroes. Read more about our conference here. | Eva Maria lives in Romania with her family and is an adventurous free spirit who loves to stay active! Whether she's riding her bike or swimming, she’s always looking for the next challenge. On her bicycle, she skips the smooth paths in favor of the bumpier routes! Strong-willed and determined, Eva Maria never gives up when she sets her mind to something. There's never a dull moment with Eva Maria—read more about her here. | |
Making Connections in Boston | | |
Following Derby Day, TESS Founder & Executive Director Kim Nye attended the Annual Meeting of the American Society of Gene & Cell Therapy (ASGCT) in Boston, where she connected with industry partners, researchers, and advocates working to advance gene therapies for rare diseases. Kim met with teams from Catalent and Elpida Therapeutics, and connected with Dr. Rachel Bailey, who developed the gene therapy for our upcoming clinical trial. Kim continues her leadership in the rare disease community as a mentor to emerging patient advocates.
While in Boston, Kim took a special opportunity to meet our newest Superhero, 7-month-old Matteo and his family. Please join us in welcoming them with open arms to our TESS community!
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Clinical Trial Update
Families that are in our Patient Registry should have received an email earlier this week informing them that enrollment for the gene therapy clinical trial at
Children's Health | UT Southwestern will be opening soon. Stay tuned for more emails and don’t forget to check your spam folder.
For more information about this clinical trial, click here.
| | Celebrating TESS Intern Sarah Gann | We have been incredibly fortunate to have had University of Notre Dame Biomedical Science student Sarah Gann working with TESS as an intern for the past year. Sarah's academic focus was in humanistic medicine and patient advocacy. While at TESS, she centered her work on improving science literacy and promoting science accessibility for the SLC13A5 Epilepsy community. Sarah has made so many contributions during her time with us and we can't wait to see what the future holds for her as she continues her studies in medicine. Please join us in celebrating and thanking Sarah! Learn more about Sarah's work here. | | |
Sarah and her team won the Best in Show Award at the End-of-Program Showcase for the University of Notre Dame Rare Project Network program. The team presented their poster which highlighted their findings relating to bridging SLC13A5 research and the lived experience of TESS families through resources rooted in empowerment, collaboration, and awareness.
Don't forget to read our latest Science Simplified article which Sarah wrote, The Role of Citrate and Neurotransmitter Imbalances in SLC13A5 Epilepsy.
| |  | A huge congratulations to Sarah for being awarded the Biological Sciences Valedictorian when graduating with a Bachelor of Science in Biomedical Science from the University of Notre Dame. Way to go Sarah! TESS is so proud of you! You can watch Sarah's valedictory address (introduction starting at 56:10) here. | | |
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As we reflect on the highlights and accomplishments shared this month, we are reminded that none of this would be possible without the continued generosity and support of our donors. Your commitment is what drives our research, fosters these connections, and creates the meaningful opportunities for individuals and families impacted by SLC13A5 Epilepsy. Thank you for continuing to be an essential part of our community and for helping us move forward every day.
With gratitude,
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. | | | | |
