Ice Epilepsy Alliance | Intractable Childhood Epilepsy

Collaboration & Advo...

IDIC15 Canada is a New Canadian non-profit organization which provides Collaboration, Advocacy and Research to families living with Idic15 and it’s variants otherwise known as Chromosome 15q11-13 Duplication Syndrome. This organization is born from the need to advance medical resources and awareness in Canada.

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

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 ...

2013 LGSF Family & Professional Conference

Lundbeck provides a limited number of scholarships that which is cover travel, hotel accommodations and conference registration fees for selected families. 2013 Scholarship Details The 2013 LGSF Family and Professional Conference takes place in Cerritos, Calif., May 3-5.

Patient Registry

The goal of the registry is to collect data on as many patients as possible to make future research into specific symptoms, causes, and treatments easier to perform. By defining a large pool of affected individuals, future research can be performed more quickly and efficiently.

Dravet Syndrome Won Compassionate Allowance Recognition

by the Social Security Administration Thursday December 6, 2012 Commissioner Astrue held an event at the Hart Senate Building at 10:00 a.m in Washington, DC to commemorate the milestone of reaching 200 Compassionate Allowances conditions. Dravet Syndrome is one of the newest additions to this list of rare and debilitating conditions. This is a huge victory for people [...]