News - Part 192

Orphan Drug Request Template Letter

Dear Parent: This is the template I have given to many parents who have advocated for payment of stiripentol, clobazam or Epistatus by private insurance or Medicaid. My first job out of residency was as Clinical Formulary Manager for a Health Maintenance Organization (HMO).  In this role, I decided if exceptions should be made for […]

Dravet syndrome as Presented to NORD

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

Stop the Status

Improving Outcomes in Pediatric Epilepsy Syndromes Stop the Status Improving OUtcomes in Pediatric Epilepsy Syndromes Overview – Seizures and Epilepsy Syndromes – Seizure Emergencies – Febrile Seizures

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 […]

Nootropic Drugs

The Piracetam-nootropics (pyrrolidone derivatives) have been exhaustively researched for more than three decades. Experimental and clinical work first focused on their so-called nootropic effects; later came the possibilities for neuroprotection after stroke and use as antiepileptic agents. The concept and definition of a “nootropic drug” was first proposed in 1972 by C.E. Guirgea, the principal  […]


The Journey to a Diagnosis Aaliyah was born on November 26, 2004.  She was diagnosed with Dravet syndrome at age 13 months.  Strangely, when she was 2 days old Michelle had a feeling that something was wrong, a feeling of impending doom.  She called Tim from the hospital and told him this, and that she […]

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 […]

Fundraiser at Bowman Gray Stadium

Winston-Salem, NC – A successful fundraising event was held at Bowman Gray Stadium this weekend.  A special thanks goes out to The Law Offices of Timothy D. Davies, participating ICE Epilepsy volunteers and sponsored driver Jasmine Hargreaves.  Congratulations also goes out to Ryan for his win on Friday night, which resulted in a special $500 donation from […]


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 […]

Case Study SUDEP with Dravet

A case of SUDEP in a patient with Dravet syndrome with SCN1A mutation *Franc¸ois Le Gal, yChristian M. Korff, *Christine Monso-Hinard, zMichael T. Mund, *Michael Morris, *xAlain Malafosse, and {Thomas Schmitt-Mechelke *Genetic Medicine, University Hospitals of Geneva, Geneva, Switzerland; yPediatric Neurology, Pediatric Specialties Service, Child and Adolescent Department, University Hospitals of Geneva, Geneva, Switzerland; zInstitute […]