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

Beth Fox
Jenny Gallo

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


Hackensack University Medical Center

92 2nd St, Hackensack, NJ 07601

Saturday, Oct 5, 2019 Presenter Session Information
8:45-9:30 Breakfast & Registration
9:30-9:45 DSF Staff and Ambassadors Welcome
9:45-10:15 Dr. Helio Pedro
Hackensack University Medical Center
Genetics in Dravet Syndrome
10:15-10:45 Dr. Ariel Sherbany
Hackensack University Medical Center
Clinical Progression of Dravet Syndrome
10:45-11:15 Dr. Eric Segal
Northeast Regional Epilepsy Group
Dravet Syndrome Treatments and SUDEP
11:15-11:45 Patty McGoldrick NP, MPA & Steve Wolf, MD
Mount Sinai, Directors of Comprehensive Pediatric Epilepsy & Developmental Disability Center
Transition and Adulthood in Dravet Syndrome
11:45-1:00 Professional Panel Lunch & Learn Q&A Panel
1:00-1:15 Wendy Fry, FACE Director
Dravet Syndrome Foundation
Community Empowerment
1:15-2:00 Elizabeth Apollo, M Ed
The Valley Program
Behavior Management in Dravet Syndrome
2:00-3:00 Mary Anne Meskis, Executive Director Patient-Centered Outcomes Research :
“Nothing for us without us”
3:00-3:30 Wendy Fry, FACE Director
Dravet Syndrome Foundation
Caregiver Burden & Care
3:30-4:30 Community Discussion

Subject to change

Hilton Hasbrouck Heights
$119 + tax, per night
Book at this link and use code “DRAVET” or call (201) 288-6100 (800) Hiltons using code “DRAVET
Last day to book is September 11, 2019

Holiday Inn Hasbrouck Heights NJ
$116 + tax, per night
Book at this link and use code “DSF” or call 201-288-9600
Last day to book is September 4, 2019

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

Registration is now closed. If you’re interested in attending please contact wendy@dravetfoundation.org

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.

DSF VOLUNTEER NETWORK

Thank you to our 2019 sponsors:

Become a Sponsor

Questions? Contact wendy@dravetfoundation.org

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