E-Newsletter

May 2022

Dear TESS Supporters,

SLC13A5 Epilepsy International Awareness Day is today, May 13th! Read below for ways to help us raise awareness today and everyday.

Last month we celebrated our 7th birthday as a nonprofit organization, which has our team reflecting on how far we have come and where we are heading. It is truly amazing how much progress you have helped us make. We hope you will watch and share our new video that highlights our efforts to support families around the world and drive research globally. We will not stop until a diagnosis of SLC13A5 Epilepsy comes with a solid treatment plan and expectations of a bright future. 

Read below for updates on upcoming conferences, fundraising successes, our latest blog posts and our TESS Superheroes! 

Yours always,

Kim Lodato Nye

Founder, TESS Research Foundation

Today, Friday, May 13, is our second annual SLC13A5 Epilepsy International Awareness Day. This disorder knows no geographic boundaries and TESS Research Foundation is the only organization solely dedicated to SLC13A5 Epilepsy, and supports families around the world. YOU can support our mission on awareness day (and every day)!

There are many things you can do to help to spread awareness of this severe genetic epilepsy, starting with educating one new person about the struggles and symptoms of SLC13A5 Epilepsy: seizures starting at birth, difficulties talking, walking, eating, and sleeping, the need for 24-hour care, and dental issues.

You can wear purple and post a photo of yourself holding your I 💜 Someone with SLC13A5 Epilepsy sign. Or plan and host a facebook fundraiser or make a donation to fund SLC13A5 research.

Together, let's raise awareness of SLC13A5 Epilepsy and continue to move toward treatments and cures for this devastating neurological disorder!

We kicked off the week leading up to Awareness Day with our inaugural TESS Research Foundation Derby Day fundraiser! Guests showed up in dresses, hats, and bowties; watched the premiere of our new video; sipped mint juleps in the garden; and cheered for their horses during a live viewing of the Kentucky Derby. "Rich Strike" surprised everyone by overcoming 87-1 odds to win the race!

But the real winners are our donors, who generously contributed/pledged more than $136,000 during our Derby Game and Fund-a-Future Paddle Raise, and our families and scientists who will benefit from these gifts. All donations will support SLC13A5 research and families participating in our Natural History Study. Thank you to everyone who came out to bet on TESS Research Foundation -- can't wait to see you next year!

Clinicians and families: Are you curious about current research on movement disorder in SLC13A5 Epilepsy? Would you like to hear a patient and caregiver perspective about participating in a gene therapy clinical trial? Excited to learn about current treatments for SLC13A5 Epilepsy?

Attend our hybrid Clinical Research Conference on June 16! Join us virtually or in-person in Dallas by registering here. You can find more information on our website.

The number of doctors visits with children who have SLC13A5 Epilepsy is in the hundreds (or even thousands!).

Every visit to the doctor creates a new medical record, which allows doctors to track important information about their patients, and also allows patients to review their own medical histories. But did you know that medical records can also be used for research? 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

Our Superheroes are the WHY behind everything we do.

Meet Marcela, a TESS Superhero of the Month! Marcela lives in Brazil and is 24 years old.  She and her brother are some of the first people in the world ever diagnosed with SLC13A5 Epilepsy!

Read more about Marcela on her permanent page here or make a donation in her honor.

Science Simplified Blog

Science is all about asking and answering questions. In Part 2 of our How to Read a Scientific Paper series, our Scientific Director, Dr. Tanya Brown, in partnership with the Dravet Foundation, shares tips on how to approach reading and understanding sections within a scientific paper.

Read the post here.

Science Simplified Blog

The third and final part of our How to Read a Scientific Paper series, presents questions to ask when critically evaluating and assessing research articles. These include: is this a research or news article? When was it published? Is it from a reputable scientific journal? Who performed and funded the study?

Read the post here. 

TESS Superhero Mattia is 8 years old and lives in Italy.

His family describes him as a sunny child, always laughing and smiling even when he is sad.

Learn more about Mattia and his journey here.

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