E-Newsletter - August 2026 | | |
Dear TESS Supporter,
August at TESS has been all about growing our team, advancing new research opportunities, and of course, celebrating our summer Superheroes. In this month's newsletter, we’re welcoming a new member to Team TESS, sharing practical guidance for families considering gene therapy clinical trials, celebrating Kim Nye’s national spotlight in the San Francisco Business Times, and introducing our Superhero of the Month. We’re also continuing to invest beyond the clinical trial, with a new grant that is funding research to identify potential drug treatments for SLC13A5 Epilepsy. This progress only happens because our amazing community continues moving forward together.
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Join us in giving a warm welcome to Sydney Cooper, MS, TESS’ newest team member currently living in Dallas, Texas! Sydney is our Clinical Operations Manager and has worked in genetics research for over 8 years. She spent the past 4 years as a Clinical Research Coordinator, coordinating rare disease gene therapy trials, which is when she began work with the TESS community. Sydney is so excited to serve as an essential resource to families who are considering participating in our current gene therapy clinical trial or any in the future. We are so lucky to have Sydney on Team TESS!
Learn more about Sydney here.
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For families considering a gene therapy clinical trial, knowing what to expect can make an important and deeply personal decision feel more manageable and less overwhelming. In our latest Science Simplified article, Sydney takes families behind the scenes of what it's like to participate in a clinical trial, from screening and baseline assessments to treatment, long-term follow-up, and the unexpected moments that can arise along the way.
Read the entire article here.
| August Superhero Spotlight: Leon | Meet Leon, our August Superhero of the Month! Leon is 3 years old and lives in England and is always ready for an adventure. He loves exploring nature, reading books, listening to stories, and playing “We’re Going on a Bear Hunt.” He’s also a big fan of diggers and tractors and hopes to drive one when he grows up. But perhaps his greatest superpower is his love of cake—any kind, any day, anywhere! Learn more about Leon and his journey with SLC13A5 Epilepsy here. | |
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TESS Featured in the
San Francisco Business Times
| | We’re thrilled to see TESS Founder & Executive Director Kim Nye featured in the San Francisco Business Times in a powerful story highlighting the groundbreaking SLC13A5 gene therapy journey. From her two children’s diagnoses to leading the development of a potential treatment, Kim shares the story of how families turned an almost impossible challenge into a path toward hope and what it takes to bring a first-of-its-kind therapy to our TESS Superheroes who desperately need it. We couldn’t be more excited to see this TESS story reaching a broader audience! Read the full San Francisco Business Times article here. | | |
TESS Named a 2026 RTW Foundation
Rare Disease Grant Partner
| | Dr. David Sauer with Superheroes Adelyn, Lucas, Meredith, and Yavi | Beyond the clinical trial, TESS continues to invest in critical research initiatives that can uncover new treatment opportunities for the SLC13A5 community. We are thrilled to announce that TESS Research Foundation was recently awarded a $75,000 grant through the RTW Foundation's Rare Disease Advisory Program (RDAP)! TESS will use this grant to support assay development for SLC13A5 by Dr. David Sauer from the University of Oxford. A screening assay is a type of fast lab test that can quickly evaluate potential drug treatments for SLC13A5 Epilepsy, a critical need for our community. We are so grateful to be a 2026 RTW Spring Rare Disease Grant Partner! | | |
As we look ahead to the fall, we’re reminded that progress is only made possible by a community that continues to show up with courage, curiosity, and unwavering commitment. From welcoming new expertise to advancing research and supporting families through clinical trial participation, every step brings us closer to a future with meaningful treatments for SLC13A5 Epilepsy. Thank you for standing alongside our TESS Superheroes and helping make that future possible.
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. | | | | |
