NINDS, August 26-27, 2010 Harriet Davies, PharmD Intractable Childhood Epilepsy Alliance (ICE) Mission: The mission of ICE is to advance identification, understanding, and cure for ion channel and other genetic epilepsies through a strategic alignment of advocacy groups, industry, government, academia, parents, and investors internationally. ICE holds Dravet syndrome as the highest priority for disease […]
News - Part 4
Dravet syndrome Represented at NIH/NINDS meeting
Dravet Syndrome Patient Registries & Why We Need Them
An international Dravet syndrome registry will aid in the understanding of this rare epileptic encphalopathy. Scientific Questions for the Ds Registry What is the natural course of Ds? What is the natural course of Ds? Do consistent genotypes/phenotype correlations exist? How does appropriate and aggressive seizure control affect the intellectual and behavioral outcome? How doe […]
ICE Hosts Event at CNS Oct. 26
ICE Epilepsy Alliance is hosting a group dinner discussion at the CNS Annual Meeting Titled “Investigational Drugs for Intractable Epilepsy”. First twenty five physcians to RSVP at SpindPharma.com/CNS will be admitted. The dinner will be held on Wednesday, October 26, at the world famous Lady & Son’s Restaurant in downtown Savannah, owned by celebrity chef Paula […]
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 […]
ICE Clinical Pearl
Vitamin B6 for behavioral improvement in children on Keppra (levetiracetam) Vitamin B6 (pyridoxine) supplementation may be useful in children with behavioral disorders associated with Keppra (levetiracetam). While there are not well controlled clinical trials, Vitamin B6 is inexpensive and safe at appropriate doses. The doses used were 100 – 200 mg/day with an average of […]
Participate in a Dravet syndrome Genetic Study
The Genetic Investigation of Child Neurological Disorders Archie Metcalfe, 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 […]
CDC-NIH Forum on SUDEP
Epilepsy Group Founder Harriet Davies to Participate in Sudden Unexpected Death in Epilepsy Adams-Salem, N.C. – Harriet Davies, PharmD, founder of the Intractable Childhood Epilepsy (ICE) Epilepsy Alliance, is one of 30 epilepsy advocates and researchers who will take part in an open forum discussion in Washington, D.C., on Oct. 13, about the causes of […]
Can Transplanted Neuronal Progenitor Cells Develop into Functioning Neurons
Released: 12/1/2010 3:45 PM EST Embargo expired: 12/7/2010 9:00 AM EST Source: American Epilepsy Society (AES) Newswise — Epilepsy research is reaching beyond improving the means for quelling symptoms to the exploration of potential modalities for correcting or reversing alterations in neural function that underlay some forms of the disorder. In research reported at the 64th American Epilepsy […]
New ICE Terminology from ILAE
Important Changes in Intractable Childhood Epilepsy Terminology – International League Against Epilepsy (ILAE) The ILAE has recently updated their classification of the epilepsy syndromes. The definitions they have listed on their website pertaining to “disease” and “syndrome” and “electro-clinical syndrome” are below: www.ilae-epilepsy.org Disease versus syndrome: Although there is reason to distinguish the concepts of disease […]
About Dravet Syndrome
Dravet syndrome Harriet Davies, PharmD written for: National Organization for Rare Diseases March 2009 Synonyms of Dravet syndrome Severe Myoclonic Epilepsy in Infancy (SMEI) Polymorphic Epilepsy in Infancy (PMEI) Epilepsy with polymorphic seizures