E-Newsletter

July 2022

Dear TESS Friends:

‘I can help.’ These are words that our team at TESS hears every day. 

Whether it is a newly diagnosed family wanting to talk to a parent who has experienced what they are experiencing now — fear, grief, exhaustion. Or the doctor of a patient with SLC13A5 Epilepsy who would like to talk with another treating physician about what medication to try next. Or a researcher who needs an animal model developed in a different lab to move their research forward. Or a donor who generously offers to pay for an affected family to travel to one of our study sites. It is our privilege at TESS to listen to what our SLC13A5 community needs and to find the people who can help. And it is our greatest joy that so many of you respond with ‘Yes, I can -- and want to -- help.’ Thank you. 

We are so proud of and grateful for the network of doctors, researchers, families, and donors who step forward to connect, collaborate, and share each and every day. Read on for five highlights from the past month. 

Yours always,

Kim Lodato Nye

Founder, TESS Research Foundation

SLC13A5 Epilepsy (Citrate Transporter Disorder) affects children and families worldwide and our pursuit of treatments and a cure are global efforts, too.

We are excited to host our SLC13A5 International Research Roundtable at IST Austria on September 7-8!

We look forward to bringing together researchers from Europe and beyond with the goal of learning from one another and identifying ways to collaborate. Share with your SLC13A5 communities and register to attend now. See you in Vienna!

Curious to know how scientists can learn about individual diseases by observing changes in animal behavior?

In humans, diseases can impact the way people move, affect their ability to remember things, or cause changes in mood and affect. Studying animal behavior can be a valuable research tool, as it offers opportunities to learn about individual diseases and helps determine whether a new research model can be useful for studying a disease. Read more in our latest Science Simplified Blog Post.

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

Dr. Tanya Brown: [email protected]

We love our Superheroes and learn from them every day!

Meet Superhero Amrik, who is nine years old and lives in the United Kingdom. Amrik loves being outdoors, listening to music, and fire engines. His parents share that Amrik is the happiest boy, with the biggest smile and an adorable laugh.

Learn more about Amrik on his permanent page or make a donation in his honor.

Last month, we shared that a new humanized mouse model for SLC13A5 Epilepsy (Citrate Transporter Disorder) is in the Jackson Laboratory pipeline with an anticipated availability date of summer 2023.

This is a milestone for several reasons: by partnering with the Orphan Disease Center’s JumpStart program, we are maximizing donor investments to develop new model systems. In addition, having the mouse model at Jackson Laboratories will ensure that this research tool is openly available for all scientists to use.

Together with your generosity, we are championing collaboration and changing the way research works!

We are thrilled that our in-person SLC13A5 Natural History Study (NHS) is officially underway, thanks to YOU and your support of TESS Research Foundation!

Superheroes Yavi, Tessa, and Colton recently visited the Stanford site, and Superhero Meredith will be making a trip to the Brown University site next month. By providing a formal narrative of what SLC13A5 Epilepsy looks like over time, our NHS will help clinicians and researchers understand the natural progression of the disease and prepare our community for clinical trials. Your donations enable families to participate in the NHS without the additional financial burden of travel, hotels, and meals for the duration of their visits. Thank you for making this possible! 

To make an investment in children and families participating in our NHS, visit our donation page.

Our hybrid Clinical Research Conference, held on June 16, was a great success! We loved being with so many families, clinicians, researchers, and industry partners in Dallas, and seeing all our virtual participants online. Contact Kim for selected video links that can be shared with clinicians and colleagues.

Thanks to everyone who purchased TESS attire during our spring Bonfire campaign. Your purchases earned more than $580 for research – and you are helping to spread SLC13A5 Epilepsy awareness! You can still order here and show that you are TESS Strong! 

Taysha Gene Therapies and CEO RA Session II gave a shout out to Superhero mom Nicole, sharing how valuable it is to hear family voices and perspectives. We are grateful for our partnership with Taysha and are excited by their continuing development of a gene therapy for SLC13A5 Deficiency!

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