CSWS Epilepsy & Landau Kleffner Syndrome (ESES) Foundation

About Us

The mission of CSWS Epilepsy & Landau Kleffner Syndrome (ESES) Foundation Inc. is to raise public awareness and passionately pursue research into epilepsies associated with Electrical Status Epilepticus During Slow Sleep (ESES) in hopes to find a cure or better treatments. We are further committed to providing support to impacted individuals and families and increasing our understanding of the causes of Sudden Unexpected Death in Epilepsy (SUDEP) and its prevention.

CSWS epilepsy, also referred to as (ESES), is an uncommon and potentially severe epilepsy syndrome that affects school aged children. These children have a unique EEG pattern known as (ESES). Children with ESES appear to be sleeping peacefully, but they suffer from near-continuous seizures while they sleep which are not visible to the naked eye. If left untreated, the child may regress cognitively and lose a wide range of developmental abilities, including language, motor skills, memory, and visuospatial skills. In severe cases, the child may lose the ability to both walk and talk. Rarely, SUDEP can occur.

When children just lose language skills it is referred to as Landau-Kleffner Syndrome. In many children there is no known cause of epilepsy and some children may never have a visible seizure. Consequently, ESES can easily remain undiagnosed for years causing potentially irreversible damage. Developmental delay and autism-like symptoms are sometimes the only sign that seizures are occurring. An overnight EEG may be required to detect this rare and very subtle form of epilepsy. Early identification and treatment is critical to preserve these children's neuropsychological development and may even save lives.

This volunteer organization was founded by impacted parents with the purpose of raising public awareness, expediting research to find a cure and better treatments and providing support to affected individuals and families around the globe. We were established in Williamsburg, Virginia on September 8, 2016. We are a non-profit organization pursuant to Internal Revenue Code Section 501 (c) (3), a public charity in the United States.

Time is of the essence if we are going to save our children's development! Please donate now to give our kids a chance and spread the word in your community!

What does it mean to have ESES?

Joshua was a typically developing five year old when he slowly began losing developmental milestones, started misbehaving in school, had difficulties learning and developed a severe stutter such that it made it hard for him to talk. His parents took him to Boston Children's Hospital for a second opinion where they learned that Joshua was having near continuous subclinical seizure activity during sleep i.e. seizures that are not visible to the naked eye.
This rare EEG pattern is known as Electrical Status Epilepticus During Sleep (ESES). Children with ESES appear to be sleeping peacefully, but they suffer from subclinical seizures while they sleep. If left untreated, the child may regress cognitively and demonstrate autism-like symptoms. In severe cases, the child may lose the ability to both walk and talk. Rarely, Sudden Unexpected Death in Epilepsy (SUDEP) may occur.

We are proud to share with you the Sing & Play 4 Kids Challenge to help raise public awareness and research funds for the kind dedicated doctors and researchers at Boston Children’s Hospital to help them discover causes, cures, and treatments for ESES and related epilepsies. Every dollar raised supports ESES research and puts us one step closer to a cure or better treatments for our kids.

Though our online Family Network, we also provide support to individuals and families impacted by ESES and related epilepsies from around the globe. If you are impacted by ESES, a caregiver or family member of a child impacted by ESES. You are not alone! We invite you to join our family group and connect with others travelling this same journey. We look forward to meeting you.

Interested in learning more about ESES and related epilepsies? We have an online group open to everyone wishing to follow us and learn more. We hope to see you there!