Category: About

ICE Statement

The Intractable Childhood Epilepsy Alliance is a non-profit 501c3 organization dedicated to improving lives of children affected by intractable epilepsy through evidence-based information, advocacy for appropriate medical treatment including compassionate use and Orphan drug products, promotion of drug development, data collection through patient registries, and funding of research that will lead to a cure for […]

Have Hope

ICE Alliance – Have Hope for Intractable Epilepsies in Children Together we will Improve the Outcome and Reach for the Cure. Epilepsy is a condition where recurrent electrical discharges in the brain disturb the normal functioning of the nervous system. These episodes of disturbance are called seizures. Two or more unprovoked (caused by fever or […]

Professional Advisory Board

ICE Alliance’s Professional Advisory Board is a group of leading intractable childhood epilepsy, genetics, and drug development researchers from both academia and industry, clinicians who work with patients with intractable epilepsy, and experts from related fields. These members live all over the world and review grant proposals, and attend relevant meetings to help determine which […]

Disclaimer

Terms of Use The ICE Epilepsy Alliance website offer complimentary information as an interactive community service at no charge to users of the World Wide Web, with the express condition that the use of this ICE Alliance website implies your acceptance of all terms and conditions. ICE Alliance reserves the right to modify these terms […]

James Hopkins, PharmD

ICE the Inferno As many as 40% of children with epilepsy do not find seizure freedom with anti-epileptic drug therapy and are considered “refractory” , “intractable“, or “drug resistant” patients. An astounding 70% of patients suffering from epilepsy do not know what is causing their seizures, and the cause is determined as “idiopathic” or “cryptogenic” . The definition of “drug resistant” epilepsy as failure of adequate […]