September 14, 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 West Coast Region’s event takes place on Saturday, September 14 at the Los Angeles Conference Center. Sibling Camp is available for siblings 4 and older who are toilet-trained.

Pre-registration is required. Registration closes September 1, 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 West Coast Parent Ambassadors

Karen Masters-Foster
Erin Reoyo
Morgan Turpin

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

Los Angeles Convention Cente

1201 S Figueroa St, Los Angeles, CA 90015

Saturday, Sept 14, 2019 Presenter Session Information
9:00-9:45 Breakfast & Registration
9:45-10:00 DSF Staff and Ambassadors Welcome
10:00-10:30 Dr. Deborah Holder
Children’s Hospital of Los Angeles
Dravet Syndrome and SUDEP
10:30-11:00 Dr. Raman Sankar
University of California Los Angeles
Clinical Trials and Gene Therapy Prospects
11:00-11:30 Dr. Jason Lerner
University of California Los Angeles
Dravet Syndrome in Adolescence and Adulthood
11:30-12:00 Q&A Panel
12:00-1:00 Lunch
1:00-1:30 Wendy Fry
DSF Family and Caregiver Engagement Director
Community Empowerment
1:30-2:30 Nicole Villas, Board President & Scientific Director Patient-Centered Outcomes Research :
“Nothing for us without us”
2:30-3:30 Wendy Fry
DSF Family and Caregiver Engagement Director
Caregiver Care
3:30-4:00 Community Discussion

Subject to change

Residence Inn Los Angeles L.A. Live
$229 per night + tax and fees
Book at this link or call 800.228.9290 using group name “Dravet Syndrome Foundation”
The last day to book is August 16, 2019

Ramada Los Angeles Downtown West
$139.00 + tax = Total Rate $160.55 per night
Call for reservations (213) 385-7141 using code DSF0913 or group name Dravet Syndrome Foundation
The last day to book is August 25, 2019

JW Marriott Los Angeles LA Live
$179.00 + tax, per night
Book at this link or call (877) 622-3056
The last day to book is August 13, 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 to Lucky Strike Bowling
4:00 Return to Convention Center for pick up

Registration for this event is now closed. For more information email 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 sponsors:

Become a Sponsor

Questions? Contact wendy@dravetfoundation.org

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