Chicago 2018 Day of Dravet2018-09-17T09:03:27+00:00

Chicago

September 15, 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 Midwest Region’s event takes place on Saturday, September 15 at Camp Manitoqua Conference Center in Frankfort, IL (about one hour south of Chicago). Sibling Camp is available for siblings 4 and older who are toilet-trained.

Pre-registration is required. Registration opens August 3 and closes September 1.

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 Midwest Parent Ambassador

Mandee Ordaz

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

8122 W. Sauk Trail
Frankfort, IL 60423

Camp Manitoqua is an hour drive from both Chicago O’Hare International Airport and Chicago Midway International Airport.

Saturday, Sept 15, 2018 Presenter Session Information
9:00-9:45 Breakfast & Registration
9:45-10:00 DSF Staff and Ambassadors Welcome
10:00-10:30 Linda Laux, MD
Lurie Children’s
Overview of Dravet Syndrome
10:30-11:00 Jennifer Kearney, PhD
Northwestern University
Research Update
11:00-11:30 Michelle Welborn, PhD Obtaining Newly FDA Approved Drugs for Dravet Syndrome
11:30-12:00 Q&A Panel
12:00-12:30 Laurie Bailey & Carla Schad Siblings and Dravet Syndrome
12:30-1:30 Lunch
1:30-2:00 Wendy Fry
DSF Family and Caregiver Engagement Director
Dravet Syndrome Foundation: Then and Now
2:00-3:00 Mary Anne Meskis
DSF Executive Director and
Wendy Fry
DSF Family and Caregiver Engagement Director
Patient-Centered Outcomes Research:
Identifying Community Needs
3:00-3:15 Break
3:15-4:45 Jenny Tischer
DSF Board Member
Guided Discussion 
4:45-5:00 Closing Remarks

Subject to change

Homewood Suites by Hilton, Orland Park
16245 South LaGrange RoadOrland Park, Illinois, 60467
We were able to secure a discounted group rate for Dravet families for a limited number of rooms.
Queen Suite (Queen + double sofa bed)  $159/night + tax
King Suite (King + double sofa bed)   $179/night + tax
Book at this link 
The last day to book is August 18, 2018

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)
9:00-10:00 Registration and Drop-off
10:00-12:00 Camp Activities led by Camp Counselors
12:00-1:00 Lunch with families
1:00-3:00 Sibling Activities and Discussion
3:00-5:00 Campground Exploration

This event has passed and registration is now closed. 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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