Another parent with a child with Doose Syndrome shared this website.

www.ice-epilepsy.org.

The ICE stands for intractable childhood epilepsy, it looks like a great site! I wish I would of been aware of it sooner! Their slogan and more info from their site...

“ICE the Inferno” , the slogan ICE Alliance has adopted, reflects the devastation, grief and pain suffered by the children who experience uncontrolled and life threatening seizures as well as the families who love and take care of these children while epilepsy destroys their developmental abilities and often takes their lives.

Drug resistant epilepsy in children can lead to brain damage, developmental delays, psychological abnormalities, and even death.

ICE Alliance is working to propel research on the intractable epilepsies of childhood in order to better understand the cause of seizures and streamline therapy towards a cure. We strive to provide pertinent, professionally written and evidence-based information to parents, caregivers, and healthcare professionals in order to improve the outcome of children faced with drug resistant epilepsy.


Lauren's syndrome is in the class of a "catastrophic drug resistant epilepsy". There is little research being done on this group. Most people (70%) that have seizures have them controlled with medication so the remaining 30% are left with only a few options, and when those options don't help there is little hope left. What I like about this website is they are searching for a cure specifically focusing on this group of children that have drug-resistant epilepsy.

Just wanted to share.