Category: Advocacy

Dravet syndrome Represented at NIH/NINDS meeting

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 […]


 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 […]

ICE Alliance Exhibits in Child Neurology Society Annual Meeting

Contact: For Release On: Christina Johansen October 12, 2010 (336) 245-6503 ICE Epilepsy Alliance to Exhibit at the 2010 Child Neurology Society Annual Meeting in Rhode Island Contact:                                                                                  For Release On: Elliot Bruce                                                                            October 12, 2010 (336) 214-7789 Winston-Salem, N.C. – The Intractable Childhood Epilepsy (ICE) […]

Orthotics for Intractable Epilepsy

Orthotics and Shoe Inserts for Children with Intractable Epilepsy Families of children in early intervention programs and those who participate in physical therapy centers often have questions about the use of shoe inserts known as orthotics for their children. Although orthotics are mentioned in many books available to families and professionals, there are few magazine […]

Early Intervention Services

It is important to start early intervention services and have regular developmental development checkups when epilepsy. Below you will find a listing of websites arranged by state that provide early intervention services, for epilepsy patients, within the United States.

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

Request for Nursing Services

To all ICE advocates:  This letter was written by a parent of a child with Dravet syndrome who appealed to the Ohio state Medicaid department for nursing services to care for her child.  Each state has a different policy and plan for developmentally disabled children and their care, dependent on level of need.  Please look […]

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 […]