Press Room

Our Mission

TESS Research Foundation drives cutting-edge research to diagnose, treat, and ultimately cure SLC13A5 Epilepsy, and provides support for affected children and their families.


TESS Research Foundation is determined to improve the lives of those affected by SLC13A5 Epilepsy. We do this by funding research, spreading awareness, and supporting children with SLC13A5 Epilepsy and their families.

Since 2015, we have gone from identifying the gene responsible for SLC13A5 Epilepsy to a gene therapy in preclinical development. We have awarded more than $2 million in research grants and are connecting a global community of scientists. We do this across countries because SLC13A5 Epilepsy does not know geographic boundaries. We do this collaboratively because it takes a team to improve treatments and find a cure. We do this with urgency because our loved ones are sick now.

We will have succeeded when all children with SLC13A5 Epilepsy can live healthy and independent lives.

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In the News


A Family Shares its Epilepsy Story to Mark Purple Day

Rowan’s story: How genetic testing for a rare condition brought answers and community


Atherton Living: A Family’s Quest for a Cure

San Francisco Business Times – How Patients’ Families Pushed Rare-Disease Therapy To Cusp Of Clinical Trial — Until Biotech’s Cash Halted Progress

San Francisco Business Times – Unlikely Drug Hunters: Why Two Bay Area Mothers Spend Their Days Chasing Rare Disease Cures


Climate Online Redwood City – Rare Disease Diagnosis Creates a Mission for Local Mom

Stanford Medicine Children’s Health – Tessa’s Mystery Condition gets a Diagnosis

Modern Luxury Silicon Valley – Medical Momentum: The TESS Research Foundation Helps Families Worldwide Fight A Rare Disorder


The Almanac – Cover Story: Facing the Unthinkable


Pen Voice Host Dani Gasparini interviews Kim Nye, President and Founder of the TESS Research Foundation

Epilepsy Foundation Northern California Newsletter 

Afreksíþróttahjón Hvött Áfram Af Hreyfihamlaðri Dóttur (Athlete Couple Urged On By Their Physically Disabled Daughter)

Stanford Medicine Magazine: Breaking The Code: Inside The Search For A Diagnosis


Beyond the Ion Channel: The ILAE Genetics Commission Blog


Beyond the Ion Channel: The ILAE Genetics Commission Blog

Additional Resources

Science Simplified