Patients & Caregivers


We FINALLY found each other. We understand and have been where you are right now, and we want you to know that you are not alone. Some of us have waited years for a diagnosis and others have received the diagnosis fast but didn’t know what to do next.

The good news is that you found TESS Research Foundation! We are caregivers just like you. We have been connecting and supporting families since this gene was first discovered. We are the only nonprofit organization funding the research that has made the biggest strides toward improving treatments and a cure for SLC13A5 Epilepsy.

We know this is an overwhelming time, and it’s hard to know where to begin. We have developed several pathways to help you get diagnosed, navigate living with SLC13A5 Epilepsy, learn how YOU can help unlock the cure, and access key educational and informational resources.

And we are here for you every step of the way. Contact us by emailing to ask questions or just to say hello and introduce yourself.