IS Awareness Week

IS Awareness Week

Infantile Spasms Awareness Week is December 6-12. Hear child neurology Foundation president Dr. Don Shields answer the most commonly asked questions about infantile spasms.

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Participate in a Dravet syndrome Genetic Study

Participate in a Dravet syndrome Genetic Study

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 syndrome must not be due to trauma, tumors, CNS infection, stroke, pregnancy or birth complications or othe environmental...

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Hope In Action

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)

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Vision 20/20 Task Force

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

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Alternative Therapy

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 literature regarding use of alternative therapies in the treatment of epilepsy. Evidence based data on efficacy of CAM therapies in...

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Have Hope

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 to a diagnosis of epilepsy.  Each year  45,000 children ages 15 and under develop epilepsy in the US.  Some of these...

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Wrong Diagnosis

Wrong Diagnosis

Focal Epilepsy, Generalized Epilepsy, Lennox-Gastaut Diagnosis, Atypical Febrile Seizures and Epilepsy of Unknown Cause Beginning in Children < 1 year old:  When to Suspect an SCN1A mutation related epilepsy A clinical study published in Brain 2007 (Harkin et al) reported from a multi-national study of 188 patients with epileptic encephalopathies (epilepsy with brain dysfunction) that 24% patients diagnosed with cryptogenic focal epilepsy and 22% patients diagnosed with cryptogenic generalized epilepsy had an SCN1A mutation , thus were...

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Sudden Unexpected Death in Epilepsy

Sudden Unexpected Death in Epilepsy

The definition of SUDEP is “sudden, unexpected, witnessed or unwitnessed, non-traumatic and non-drowning death in epilepsy, with or without evidence for a seizure and excluding documented status epilepticus, in which postmortem examination does not show toxicological or anatomical cause for death.”

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