Attention Dravet Parents: National trial to assess drugs for severe seizures
IMPORTANT INFORMATION FOR ALL FAMILIES
A new clinical trial will compare three commonly used anti-seizure medications used to treat status seizures at 44 locations across the US. National EFIC rules allow research studies in certain emergency situations, such as this one, to be conducted WITHOUT PATIENT OR PARENTAL CONSENT.
When this was discussed last year at AES, several Dravet clinicians along with DSF representatives and Michelle Warren Welborn expressed their concern about children with DS potentially receiving some of the three medicines approved for the study – levetiracetam, valproic acid and fosphenytoin.
The investigators agreed that they would always honor a written seizure plan provided by the child’s primary neurologist AND they have included options to opt out of the trial. You can add an “ESETT Study Declined” to a medical alert tag or bracelets or have your child wear an opt-out bracelet with the words “ESETT declined.” To obtain bracelets, visit the Established Status Epilepticus Treatment Trial website at www.esett.org or call 314-454-2341.
REMEMBER – IF YOU ARE AT A PARTICIPATING CENTER, YOUR CHILD MAY BE INCLUDED IN THE TRIAL WITHOUT PARENTAL CONSENT. It is highly encouraged that you make sure your child has a current copy of their emergency treatment protocol with them at all times. Under “Files” in this group, you can find a list of participating centers (entitled ESETT sites). You may also want to contact your emergency center to see if they are involved in this trial.
Mary Anne was a founding member of DSF, stepping off of the Board to take the position of Executive Director in 2012. She is a passionate advocate for the Dravet syndrome community and has served in various capacities for the community prior to the inception of DSF in 2009. In addition, she currently serves on several epilepsy working groups, including the Epilepsy Leadership Council.
She has owned and managed several small businesses in the private sector, spanning over 25 years. This business experience has translated well into her role as Executive Director. She is responsible for the overall organizational management and has continued to expand programming and fund development for DSF.
Mary Anne resides in North Carolina with her husband and her youngest son, Elliot, who has Dravet syndrome. It is her son who drives her to be a catalyst for change within the Dravet syndrome community.