5th Dravet & Genetic Epileptic Encephalopathies
The 5th Australian and New Zealand Dravet and Genetic Epileptic Encephalopathies Family Conference was held on Saturday 14 October at the Melbourne Brain Centre. While the previous four Family Conferences over the last 13 years focused on Dravet Syndrome, in 2017 we were fortunate to have a grant from The University of Melbourne to help us extend this to all the families whose children have epileptic encephalopathies, and record videos as ongoing resource. On the day, we had people attending in-person from across Australia and New Zealand and other joining in via the live-stream from the USA, UK, Canada, Australia, New Zealand, India, China, Portugal, Central Africa, and Taiwan.
Our videos start with a general overview of the syndromes that come under the umbrella of the genetic epileptic encephalopathies. While Dravet Syndrome is the most well known of these diseases, there are many other diseases which fall under this umbrella. Nevertheless, there are many associated conditions (co-morbidities) that occur frequently and families are often dealing with similar issues. The aim of this conference was to focus on practical concerns that families face on a day-to-day basis. This includes sleep, behavioural problems, educational considerations, seizure monitoring and medication. In each session there are questions from families attending both in-person and online.
Our warmest thanks to speakers for preparing their talks and contributing to this event by sharing their knowledge and answering your questions. We are also indebted to our wonderful panel of parents chaired by ABC journalist Sara James, who have shared their knowledge and insights into dealing with the day-to-day dilemmas of having children with these diseases. Our community is indeed fortunate to have such parents leading the way.