IDEA League Donations

First Ever Conference on Dravet Syndrome

On August 8-13, 2006, the International Dravet syndrome Epilepsy Action League (IDEA League) hosted the world’s first medical and family conference on Dravet syndrome in St. Paul, MN. Families and interested medical personnel from across the U.S., Canada, Europe and the United Kingdom gathered to hear experts in pediatric epilepsy, genetics and other related fields present the most current information available regarding Dravet syndrome and the issues surrounding it. The conference, entitled Channeling In: Hope for Intractable Genetic Febrile Epilepsies, was supported by Gillette Children’s Hospital, and provided continuing medical education credits to qualifying attendees. Biocodex provided financial support.

Scientific presentations covered topics such as the causes, diagnosis, course, secondary manifestations, and treatment of Dravet syndrome. Family centered presentations focused on issues such as behavior and sleep concerns, finding resources, and participating in decisions about treatment. Presenters included many international experts, including Drs. Charlotte Dravet, Catherine Chiron and Rima Nabbout. A highlight of the conference was that these presenting physicians also shared their time and expertise to provide clinical evaluations for parents and their children with Dravet syndrome.

In addition to the medical presentations and clinics, the conference also included several social events. Families were able to connect, share experiences and learn from one another in a variety of activities, including a picnic at the home of conference hosts Paul and Joan Skluzacek, an evening of pizza and play at Courage St. Croix Therapeutic Recreation Center, and a paddleboat ride up the Mississippi river courtesy of the Miss Croix Yacht Club

Said Jennifer May, a parent who attended the conference, “The IDEA League conference gave me the opportunity to receive priceless information and advice about this rare and difficult condition. I was able to discuss my concerns, experiences and opinions with amazing professionals who have taken a special interest in Dravet syndrome. At the same time, meeting together with so many other families who have children with Dravet syndrome was an incredibly touching experience.”