October 19, 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 Midwest Region’s event takes place on Saturday, October 19 at the University of Michigan Medical Center in Ann Arbor, MI. Sibling Camp is available for siblings 4 and older who are toilet-trained.

Pre-registration is required. Registration closes October 4, 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 Midwest Parent Ambassadors

Mandee Ordaz
Tina McDermott
Kathy and Bob Dodd

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

University of Michigan Medical Center

Towsley Center for Continuing Medical Education

1515 HOSPITAL DR
Ann Arbor, MI 48109

Saturday, Oct 19, 2019 Presenter Session Information
9:00-9:45 Breakfast & Registration
9:45-10:00 DSF Staff and Ambassadors Welcome
10:00-10:30 Dr. Aimee Luat
Children’s Hospital of Michigan
Overview of Dravet Syndrome
10:30-11:00 Dr. Louis Dang
University of Michigan Medical Center
Research Update
11:00-11:30 Dr. Julie Ziobro
University of Michigan Medical Center
Treatments
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 DSF Staff Caregiver Care
3:30-4:00 Community Discussion Open Discussion

Subject to change

Wyndham Garden Ann Arbor
$99 per night
Book at this link or call (877) 999-3223
Group Code: DSF2019
The final date to book is September 10, 2019

Hampton Inn Ann Arbor – North 
$129 + tax per night per night
Book at this link or call 734-996-4444
Group Code: DFW or Group name: 2019 Dravet Syndrome Foundation Workshop
The final date to book is September 18, 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 (TBD)
4:00 Return to Towsley Center for pick up

Ann Arbor Day of Dravet Registration 2019

  • Please include all members of your group: adults, children, caregivers, etc.
  • Please list all adult attendees in your group as they should appear on their name badge. Click (+) to the right to add multiple names.
  • Please list the name and age of any child(ren) or adults with Dravet syndrome in your group. 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. Click (+) to the right to add multiple names.
  • Please list the names & ages of any sibling(s) who will be attending Drop-off Sibling Camp. Children must be 4 years or older and toilet-trained. At the close of registration permission forms and detailed information will be sent. This information must be submitted prior to your workshop date in order for your child(ren) to attend Sibling Camp. Click (+) to the right to add multiple names.
  • Please list the names & ages of any sibling(s) who will be at the event but not attending sibling camp. Click (+) to the right to add multiple names.
  • Please list the names and dietary restrictions, food allergies, or medical diets of anyone in your group. We will do our best to accommodate your needs. Click (+) to the right to add multiple names.
  • I grant permission to DSF and its authorized agents to use any photos or video taken of myself or my family members at this event for any purpose.
  • Please select which activities your group would be interested in attending with fellow Dravet families. Based on the level of interest, special activities may be organized by your regional Parent Ambassadors. These special activities are independent of Day of Dravet and are provided as a courtesy for additional family engagement. Families are responsible for any and all costs associated with these special activities.
  • There is a $25 non-refundable registration fee per family. The $25 fee covers all members of your family and includes sessions, sibling camp, breakfast and lunch. Please note, parent and/or caregiver attendees 18 years and older will receive a $30 Amazon gift card for their participation in the Patient Centered Outcomes Research Discussion and Panel through a grant provided by PCORI (Patient Centered Outcomes Research Institute)
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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.

Thank you to our sponsors:

Become a Sponsor

Questions? Contact wendy@dravetfoundation.org

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