October 5, 2019
Dravet Syndrome Foundation’s (DSF) Day of Dravet Workshops are a time for patients and their families to come together to learn about research and treatment options, connect with one another, and be a part of a DSF’s shared vision for a better outcome for those affected by Dravet syndrome.
Our Northeast Region’s event takes place on Saturday, October 5 at the Hackensack University Medical Center in Hackensack, NJ. Sibling Camp is available for siblings 4 and older who are toilet-trained.
Pre-registration is required. Registration closes September 20, 2019.
Dravet patients are welcome to attend these sessions, but to be fair to all attendees we ask that you remove anyone who is disruptive from the meeting space. A separate space will be available with activities for Dravet patients and their caregivers to enjoy. Parents and caregivers are responsible for monitoring Dravet patients at all times.
Special thanks to our Northeast Parent Ambassadors
The intent of these workshops is to allow regional families to meet and connect, and due to limited the capacity at each event, we request that you only register for the event in your geographic region as designated in DSF’s Family Network. Our regional map may be found at www.dsffamilynetwork.org
|Saturday, Oct 5, 2019||Presenter||Session Information|
|9:00-9:45||Breakfast & Registration|
|9:45-10:00||DSF Staff and Ambassadors||Welcome|
|10:00-10:30||Dr. Eric Segal
Northeast Regional Epilepsy Group
|Overview of Dravet Syndrome|
|10:30-11:00||Dr. Ariel Sherbany
Hackensack University Medical Center
DSF Family and Caregiver Engagement Director
|1:30-2:30||Mary Anne Meskis, Executive Director||Patient-Centered Outcomes Research :
“Nothing for us without us”
|2:30-3:30||DSF Staff||Caregiver Care|
Subject to change
Day of Dravet Sibling Camp is a unique experience for siblings of children with Dravet to connect with each other. Much like parents, siblings walk away from Day of Dravet feeling connected and empowered by new friendships formed and memories made. Thanks to our sponsors and volunteers, these experiences are provided at no cost to families.
Children must be 4 years or older and toilet-trained. We will contact you with detailed information about camp two weeks prior to the event.
Schedule (Subject to change)
9:00-9:45 Registration and Drop-off
9:45-12:00 Camp Activities led by our facilitators Laurie Bailey and Dr. Carla Schad
12:00-1:00 Lunch with families
1:00-4:00 Field Trip
4:00 Return to meeting space for pick up
As an organization that values fiscal responsibility, we run our Day of Dravet and DSF Family Network programming from sponsorships and grants allowing funds raised by families and community members to be focused on research. This is only made possible by the generous contributions of our sponsors and support of our wonderful volunteers.
Do you have a skill or service to contribute? We are always looking for community members to support our Day of Dravet events. Please consider registering for the DSF Volunteer Network or becoming an event sponsor. You can contact Wendy for more information.