October 6, 2018
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, October 6 at Talaris Conference Center in Seattle, WA. Sibling Camp is available for siblings 4 and older who are toilet-trained.
Pre-registration is required.
Registration opens August 3 and closes September 21.
You are welcome to have your child with Dravet syndrome with you during sessions, but we ask that you are respectful of other attendees and remove your child if they become disruptive. We will have a nearby space available with activities for Dravet children and their caregivers to enjoy.
Special Thanks to our West Coast 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
4000 NE 41st Street
Seattle, WA 98105
tr>1:00-2:00Marcio Sotero De Menezes, MD
Swedish Neuroscience InstituteNew advances in the Treatment of Dravet
|Saturday, October 6, 2018||Presenter||Session Information|
|9:30-9:45||DSF Staff and Ambassadors||Welcome|
|9:45-10:00||Laurie Bailey, Zogenix
Carla Schad, MD, Zogenix
|Sibling Study Updates|
|10:00-11:00||Russell P. Saneto, DO, PhD||Introduction to Dravet Syndrome and Q&A|
|11:00-12:00||Nicole Villas, Board President & Scientific Director||Patient-Centered Outcomes Research: Identifying Community Needs|
|1:00-2:00||Marcio Sotero De Menezes, MD
Swedish Neuroscience Institute
|New advances in the Treatment of Dravet|
|2:00-2:30||Nicole Villas, Board President & Scientific Director||Obtaining Newly FDA Approved Drugs for Dravet Syndrome|
|2:30-3:00||Erin Reoyo, DSF Parent Ambassador
Wendy Fry, DSF Director of Family and Caregiver Engagement
|DSF: Our Collective Impact|
|3:00-3:30||Amanda Stansfield||Health and Wellness for the Caregiver|
|3:30-4:00||Marcee Meriam, Kindering Early Intervention||Finding Hope and Joy in Neurodiverse Parenting|
|5:00-8:00||Family Dinner in the Pacific Dining Room|
Subject to change
Talaris Conference Center
We have secured a room block for Dravet families with the discounted rate of $159/night. To book the group rate call the main line at 206-268-7000, and share that you are with the Dravet Syndrome Foundation event.
Day of Dravet Sibling Camp is a unique experience for siblings of children with Dravet to connect with each other. Much like parents, sibs 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)
8:30-9:30 Registration and Drop-off
9:30-12:00 Activities and Discussion facilitated by Laurie Bailey and Carla Schad
12:00-1:00 Lunch with families
1:00-5:00 Field Trip to Seattle Center
Registration for this event is now closed.
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.