Fort Worth 2018 Day of Dravet2018-10-31T10:36:54+00:00

Fort Worth, Texas

November 3, 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 Mountain Region’s event takes place Saturday, November 3 at Cook Children’s Hospital in Fort Worth, TX. Sibling Camp is available for siblings 4 and older who are toilet-trained.

Pre-registration is required.
Registration opens August 3 and closes October 19.

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 Mountain Region Parent Ambassadors
Emily Heaton-Zeigler
Lynne Howard
Meghan Wilson

And Parent Volunteer
Shawna Davis

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

Cook Children’s Medical Center
801 7th Ave, Fort Worth, TX 76104

Subject to change

Saturday, November 3, 2018 Presenter Session Information
8:30-9:30 Registration & Breakfast
9:30-9:45 DSF Staff & Ambassadors Welcome
9:45-10:00 Carla Schad, MD Sibling Project Updates
10:00-10:30 Meghan Wilson, Parent Ambassador
Emily Heaton-Zeigler, Parent Ambassador
Lynne Howard, Parent Ambassador
Dravet Syndrome Foundation: Our Collective Impact
10:30-11:30 Scott Perry, MD

Treatment of Dravet Syndrome: Old Standbys and Emerging Therapies

11:30-12:00 Nicole Villas, DSF Board President and Scientific Director Obtaining Newly FDA Approved Drugs for Dravet Syndrome
12:00-1:00 Lunch
1:00-2:00 Brad & Karen Thompson Maintaining Relationships while Caring for a Child with Special Needs
2:00-2:30 DSF Parent Ambassadors

Activity: Finding Joy while Parenting a child with Special Needs

2:30-3:30 Nicole Villas, DSF Board President & Scientific Director Patient Centered Outcomes Research: Identifying Community Needs
3:30-4:00 Stephanie Copeland, M.Ed Resources Discussion
3:3o-4:45 Open Dialogue
4:45-5:00 Closing Remarks

Homewood Suites by Hilton – Fort-Worth Medical Center
2200 Charlie Lane Fort Worth, Texas 76104, 1-817-921-0202
A block of rooms has been reserved for November 2, 2018 – November 4, 2018. The special room rate will be available until October 2nd or until the group block is sold-out, whichever comes first.
Book here

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

Registration for this event is now closed. If you have any questions please contact wendy@dravetfoundation.org

Thank you!

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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