Doose Syndrome Epilepsy Alliance (DSEA) was informally established in 2002 by parents of children diagnosed with Myoclonic Atonic Epilepsy (MAE), commonly referred to as Doose syndrome. These pioneering parents had corresponded through a Yahoo group. Although it started with just 5 members seeking community we formally established Doose Syndrome Epilepsy Alliance (DSEA) as a 501c3 not for profit (For Impact) organization in October of 2014 after having a fiscal sponsorship agreement for the previous 3 years. Our numbers have now swelled to over 1500 from all around the world.
Currently, the Doose diagnosis has been accepted by leading hospitals worldwide. However, many hospitals and doctors remain unfamiliar with it and do not appropriately or effectively diagnose and treat children with Doose syndrome. We want to change that. Every child and their family deserves to be supported. We are joining forces to create change.