E-Newsletter - April 2026

www.tessresearch.org

Dear TESS Supporter,

We are getting ready to cross the finish line just like Ellie! It’s a BIG week for TESS. First, our SLC13A5 Research Roundtable is taking place on Thursday, April 30th and Friday, May 1st in Menlo Park, California. We can’t wait to gather together with our research and family communities to share stories and discuss the latest developments in SLC13A5 research. Then on Saturday, May 2nd, it’s time for fancy hats, fast horses, and big wins for TESS as we celebrate our 5th Annual Derby Day fundraiser at Sharon Heights Golf & Country Club! Thank you to our incredible supporters for making this a SOLD OUT event!! If you aren’t able to join us this year, you can still help us reach our fundraising goal by making a donation.

Rare Bootcamp

Earlier this month from April 7-9, our Founder and Executive Director Kim Nye travelled to Boston to attend Rare Bootcamp. Hosted by Ultragenyx and the EveryLife Foundation for Rare Disease, Rare Bootcamp is a multi-day forum designed to provide parents and patient advocates seeking to develop rare disease therapies with an opportunity to learn from rare disease drug development experts and to connect with their peers. Rare Bootcamp is responsible for educating new leaders in the rare disease space and attendees are often actively funding research while pursuing potential therapeutic approaches.

This year was extra exciting as Kim was invited to deliver the Keynote Address on the final day of Bootcamp–a well-deserved honor!

APRIL TESS SUPERHERO:

Meet Adelyn!

Adelyn is a beautiful, bright-eyed baby girl that just adores her big sister, Superhero Meredith, and loves being spoiled by her two older brothers, Matthew and James. She is such a happy baby and charms everyone she meets with her big smile.

Adelyn is special for so many reasons, one being that she made history by being the first baby ever to be diagnosed with SLC13A5 Epilepsy while still in-utero. This allowed doctors to prepare for her arrival and anticipate her medical needs before she was even born. She received early interventions that controlled and almost eliminated her seizures. Adelyn’s improved quality of life is living proof that research funded by TESS transforms lives, but what lies ahead for her is still uncertain.  

On April 29th, Adelyn turns 1! Join us in celebrating this big milestone along with Adelyn’s family and friends. Happy 1st Birthday, Adelyn–may every wish come true!

NEW Publication:

American Epilepsy Society Clinical Practice Guideline: Infantile Epilepsy

The American Epilepsy Society has released new clinical practice guidelines for infantile epilepsy, providing evidence-based recommendations on medications, dietary therapies, and surgical options for babies and toddlers with drug-resistant seizures. Read the full publication to explore the findings in detail. 



Our Founder & Executive Director, Kim Nye, was invited to co-author the paper alongside three other patient advocates, helping ensure that family perspectives and lived experiences were represented alongside expert clinical insight. The guidelines emphasize the importance of early evaluation and the benefits of timely intervention.

Hey TESS parents - we want to hear from YOU!! We love learning everything there is to know about our Superheroes! Please share your superhero’s story using this link–your child could be our next Superhero of the Month!!

As we gather together and celebrate big milestones this week, we’re reminded how powerful our community truly is. Thank you for being part of this great momentum—you are driving this research forward and creating a brighter future for every child with SLC13A5 Epilepsy.

With gratitude,



Team TESS

TESS Research Foundation is a 501(c)(3) tax-exempt public charity.

Tax ID 47-3108868

Copyright © 2026 TESS Research Foundation, All rights reserved.