October 13, 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 Southeast Region’s event takes place on Saturday, October 13 at Cobb Galleria Centre in Atlanta, GA. Sibling Camp is available for siblings 4 and older who are toilet-trained.
Pre-registration is required.
Registration opens August 3 and closes September 28.
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 to enjoy. Parents and caregivers are responsible for monitoring their child with Dravet at all times.
Special Thanks to our Southeast 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
Cobb Galleria Centre Atlanta
Two Galleria Parkway
Atlanta, Georgia 30339
|Saturday, October 13, 2018||Presenter||Session Information|
|8:30-9:30||Registration and Breakfast|
|9:30-9:45||DSF Staff and Ambassadors||Welcome|
|9:45-10:00||Laurie Bailey, Zogenix||Sibling Study and Project|
|10:00-11:00||Robert Flamini, MD
|Dravet Syndrome Overview|
|11:00-12:00||Michelle Welborn, PhD||Obtaining Newly FDA Approved Drugs for Dravet Syndrome|
|1:00-1:30||Wendy Fry, FACE Director
Kimberly Brorson, Parent Ambassador
Shannon Cloud, Parent Ambassador
|Dravet Syndrome Foundation: Our Collective Impact|
|1:30-3:00||Mary Anne Meskis, Executive Director||Patient-Centered Outcomes Research:
Identifying Community Needs
|3:15-4:45||Wendy Fry, Director of Family and Caregiver Engagement||Open Discussion|
Subject to change
2844 Cobb Parkway SE, Atlanta GA 30339
A discounted group rate is available for Dravet families at this link.
Reservations can be made by calling toll-free 1(800) 321-2211 /1(800) 331-3131 and asking for the Dravet Syndrome Foundation group block at the Courtyard Cumberland/Atlanta Galleria.
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 Georgia Aquarium
Registration for this event is now closed. Please contact firstname.lastname@example.org with questions.
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.