Ice Epilepsy Alliance | Intractable Childhood Epilepsy

Participate in a Dravet s...

The Genetic Investigation of Child Neurological Disorders Joseph Gleeson, M.D. And his team at UCSD seek to identify new causes of Dravet syndrome Who Can Help? Families with: prefer at least 2 members with epilepsy and at least one with Dravet syndrome (Also accepting Dravet participants without a family history of seizures) Dravet syndrome as a primary diagnosis and no SCN1A mutations found Epilepsy or Dravet...

Hope In Action

Novel Compound Designed to Increase Protein Expression in SCN1A loss of function Mutations •More than 700 mutations of the Scn1a gene have been identified making this the most commonly mutated gene in human epilepsy. •More than 50% of these mutations result in a truncated protein clearly demonstrating haploinsufficiency of SCN1A as a cause of Dravet Syndrome. This means the mutation leads to a loss of function due to a premature stop codon (frameshift, nonsense, splice site, deletion, microdeletion)

Vision 20/20 Task Force

ICE Epilepsy Alliance is a member of the American Epilepsy Society’s Vision 20/20 Task Force, a group of advocacy groups committed to improve the lives of patients with epilepsy. At the request of the Department of Health and Human Services Office of the Assistant Secretary for Planning and Evaluation, the National Institutes of Health, and Vision 20/20 the Institute of Medicine will convene an ad hoc committee to reco

Seizure Alert Dogs

As many studies have concluded, alert and assist dogs can be beneficial for people with epilepsy. Alert and assist dogs range from assisting a person in day to day life, alerting when a person has a seizure, to even prediction an upcoming seizure. Although it must be noted a dog cannot be trained to predict seizures, it does occur, and through training dogs can be used to alert upon seizures, and even call for...

Alternative Therapy

Alternative therapies in treating epilepsy Yatin Patel Doctor of Pharmacy Candidate Wingate University School of Pharmacy Michelle Welborn, PharmD Preceptor Intractable Childhood Epilepsy Alliance www.ice-epilepsy.org Abstract Many people in the United States experiment with complementary and alternative medicines (CAM) on regular basis. The objective of this article is to provide a synopsis of available...

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 nervous system infection) seizures typically leads ...

FDA Approves ONFI™ (clobazam)

“Clobazam, now approved as ONFI, was shown to be effective as adjunctive therapy for reducing seizures associated with LGS,1 and its upcoming availability provides hope for additional seizure management to patients and their physicians, caregivers and families.”

Understanding Infantile Spasms (IS)

The goal of IS Awareness Week is to provide pediatricians, child neurologists, parents and caregivers with objective educational tools which will increase awareness and understanding of infantile spasms.

About ICE

The Intractable Childhood Epilepsy Alliance (also known as the Ion Channel Epilepsy Alliance) is committed to facilitating the understanding of the root cause of the epilepsies and avenues to better treatment and ultimately a cure.