NORSE Research Fund

New Onset Refractory Status Epilepticus (NORSE) is a condition that often affects children and healthy young adults. It can strike without warning and patients develop severe uncontrollable seizures that often results in having to be supported for months in an intensive care unit. The condition has a high chance of a patient’s life ending after succumbing to innumerable seizures; and those that survive are often left with significant disability and very difficult to treat epilepsy.

There is great uncertainty for patients and families with NORSE. Although there is growing awareness of the condition there is still much to do. The Epilepsy Society of Australia is privileged to support the Australia/ New Zealand NORSE Research Fund. The fund will be governed by the ESA Research and Training Committee and provide research grants to local researchers to specifically to further the understanding of NORSE, its causes and treatments. The fund has been based on the generous donation of the Cole Family who joined the mission to better the lives of other families going through NORSE. This fund is in honor and loving memory of their daughter Bek that lost her fight with NORSE.