Talks at conference:
Our family’s story, this organization’s story.
Original Write Up:
We will use this conference to build community among our families, disseminate information on current research, and address practical challenges associated with raising fragile children. We have chosen to host this event at Caribe Royale – a beautiful resort hotel that should meet all our needs for a nice conference facility with plenty of perks for the family.
We will run the conference much like we did in 2016. We will kick off the conference Thursday night with a welcome dinner. Friday will be our dedicated conference day. We have invited our scientific coordinator, Marco Crimi, from Ring14 International to give us an update on research and an overview the guidelines for care which was recently published. We have also invited Brandy Fureman, Vice President of Research and New Therapy at Epilepsy Foundation (EF). She will give us an overview of resources at EF, new therapies and devices, and how we can get involved with the Rare Epilepsy Network (REN). We will also invite a behavioral expert to address the challenges of raising mentally disabled children. Each of the 3 talks will end with a Q&A session, and the day will be concluded with a parent forum. While the adults learn, the affected children and siblings will be able to play and explore the resort under the supervision of capable volunteers. Saturday will mostly be dedicated to family fun and community building as everyone gets to explore the resort together. For families who are interested in contributing to our bio-bank to further our research efforts, a clinician will be available to draw blood samples. We will conclude the conference with a farewell breakfast together on Sunday morning. Then you’re free to explore the city!
The goal of this conference is to address the medical, educational and social needs of our families in a fun and relaxing environment. It will be an exciting and enriching time together. We hope as family as possible will be able to attend.