E-Newsletter

August 2022

Dear TESS Friends,

I love the beginning of the school year. I love taking my kids to pick out new backpacks and lunchboxes. I love fresh school supplies and the excitement of new teachers and new friends. There is a hope and an energy that comes with a fresh start and a new beginning. 

And if I am being honest, I love the beginning of the school year because it brings respite. For parents of children with SLC13A5 Epilepsy (like me), summer can be very difficult. We lose our routines and our teams of teachers, therapists, and helpers. Children with SLC13A5 Epilepsy have so few opportunities during the summer. My healthy daughters have many options for camps and amazing summer experiences. Summer experiences for Tessa and Colton who have SLC13A5 Epilepsy come with a mixture of begging for inclusion and apologizing for behaviors; they come with great cost and a lot of paperwork and planning. Sometimes I struggle to find enough patience to get through the long summer days, while simultaneously feeling guilty that I did not savor every moment with my kids, whom I love more than anything in the world. I’m sending a hug and heartfelt sympathy to other parents out there who feel that same combination of love, guilt, exhaustion, and gratitude. We made it through another summer, and I bet our families made more happy memories than even we realize! 

In addition to the new school year, we have lots of new beginnings at TESS Research Foundation. Read on to meet our new Board Member, our new grantees, and a new TESS Superhero of the Month… plus we are hosting our first-ever research conference in Europe.

Yours always,

Kim Lodato Nye

Founder and Executive Director, TESS Research Foundation

Our Board of Directors is responsible for TESS Research Foundation’s governance and we are deeply grateful for the enthusiasm, dedication, and generosity that our (all-volunteer) Board provides. We are thrilled to welcome Amber Black to the Board, where she is taking on the role of vice president. Amber is a fierce advocate and thoughtful supporter for TESS Research Foundation and families affected by SLC13A5 Epilepsy. Most importantly, Amber is Rowan’s mom! Rowan has SLC13A5 Epilepsy and lives with his parents in Fergus, Ontario, Canada. You’ll recognize the Black family from our video; you can read more about Amber here.

We recently awarded research grants to four early-career investigators whose work will continue to broaden and deepen our understanding of SLC13A5 and develop open-science tools that can be used by other basic scientists. Meet two of our grantees: Deepika Dogra, PhD, post-doctoral researcher from the University of Calgary, and Valeria Jaramillo-Martinez, graduate student from Texas Tech University Health Sciences Center.

Dr. Dogra is expanding the SLC13A5 research toolkit by assessing an SLC13A5 Epilepsy zebrafish model and is developing brain organoids. Ms. Jaramillo-Martinez is investigating SLC13A5 patient-specific variants and studying how different mutations affect protein localization and function. We are thrilled to support these research superstars!

Visit our website to learn more about our ongoing grants and studies. You can invest in early career investigators and SLC13A5 research here.

Did you know we have TESS Superheroes around the world? They are the reason TESS exists and it is such a privilege to know and support them and their families. Superhero Miguel is from Brazil. He is six years old, loves swimming at the beaches and the pool, and all his favorite toys are in the shape of a circle: balls, tires, and rings! Learn more about Miguel on his permanent page or make a donation in his honor.

We often talk about the importance of mouse models and their role in helping find treatments and a cure for SLC13A5 Epilepsy. Mice are quite useful for studying genetic diseases like SLC13A5 Epilepsy because they breed quickly and easily. We have also become very skillful at modifying their genes to create genetic mouse models. But what ARE genetic mouse models, and HOW can they help us study genetic diseases and develop treatments? Read more in our latest Science Simplified Blog Post.

Want a specific topic covered? Let us know! Email our Scientific Director,

Dr. Tanya Brown: tanya@tessfoundation.org

Register now for the American Society of Gene and Cell Therapy (ASGCT) free Lunch & Learn, featuring Kimberly Goodspeed, MD. On August 25 at 10 am PDT, Dr. Goodspeed will be sharing common routes of gene therapy drug delivery, reviewing the preclinical study model, and how these routes are currently used in approved therapies or clinical trials. Dr. Goodspeed is an assistant professor at UT Southwestern and is the clinical leader of our Dallas Natural History Study.

Our International Research Roundtable, hosted in partnership with IST Austria, is September 7-8 in Vienna, Austria! The Roundtable will bring together basic scientists and researchers focused on SLC13A5 Epilepsy (Citrate Transporter Disorder) from around the world to connect and collaborate. Register now!

Our in-person Natural History Study at Brown University is officially underway!

Superhero Meredith and her family traveled to Providence, RI in mid-August and met with Dr. Judy Liu and the Brown team. Thank you to everyone who is making this important research possible!

Watch TESS President Kim Nye’s June 5 talk at the Epilepsy Foundation Pipeline Conference.

Kim shared the impact of COVID on clinical trials and provided the perspective from an affected family.

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