This webinar was broadcast live on June 10, 2021.
Rare within rare – ESES Electrical status epilepticus during slow-wave sleep (ESES), also known as continuous spike-wave of slow sleep (CSWS) or epileptic encephalopathy with continuous spike-and-wave during sleep (or EECSWS) is a rare epilepsy syndrome that is usually seen in children who already have epilepsy or another epilepsy syndrome.
In this webinar, you will learn about what to be on the lookout for and what you can do. While there is still relatively little known about this disorder, there is some emerging research and there are drug trials in progress.
The panelists for this session are:
Leah Schust Myers – Executive Director of FamilieSCN2A Foundation and mom to Ben who has SCN2A-related epilepsy & was recently diagnosed with ESES. She will share what the clues were that something was going on and the journey for answers through highly unchartered territory.
Dr. Rob Stowe – Pediatric Neurologist and Assistant, Department of Neurology Instructor of Neurology, Boston Children’s Hospital & Harvard Medical School, whose clinical and research interests lie in the complex interface between sleep, epilepsy, and genetics.
Carolyn McMicken, Ph.D. – Director, Clinical Development – Neurology & Rare Disease at Neurocrine Biosciences, a company exploring drugs to help those with ESES/CSWS.
For most children, sleeping brings a night that can be filled with dreams of exploration and adventure. But, for children with epileptic encephalopathy with continuous spike-and-wave during sleep (or EECSWS), sleep is filled with continuous epileptic activity that leads to severe cognitive and behavioral impairments. There are no approved treatments for pediatric patients with EECSWS but critical research is underway on an investigational medication. Come learn more about this rare condition and about this new treatment in clinical trials.
The Steamboat Study is looking for children 4-12 years old with a clinical diagnosis of EECSWS to take part in this 21-week clinical research study. Click here to learn more.
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