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 […]
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 […]
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 […]
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 […]
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 […]
Voices & Viewpoints Discusses Dravet Syndrome Picking up from where they left off in their last radio discussion Harriet Davies and Isaac Winter discuss Dravet Syndrome. A severe form of epilepsy that typically manifests after the first six months of life and before the child’s first birthday. This disease is considered a rare disease, and […]
The Dravet syndrome Spectrum Introduction Sodium channel related seizure disorders encompass a spectrum that ranges from simple febrile seizures (FS) and genetic epilepsy with febrile seizures plus (GEFS+) at the mild end to Dravet syndrome (Ds) at the severe end. There are currently 359 SCN1A disease-causing mutations reported in the literature. Recent discovery of the […]
Q: My daughter is having surgery. What type of anesthesia can be used with stiripentol? Are there interactions between stiripentol and anesthesia? I called Biocodex, the maker of stiripentol, and they didn’t have the answer. A: Pharmaceutical companies don’t generally give information out on questions that have not been studied or documented with literature. Most […]
