Midwest Region
Day of Dravet
Saturday, August 23
Great Wolfe Lodge (Gurnee, IL)
Event Information and Schedule
Saturday August 23:
Day of Dravet Workshop 9 am – 4 pm
- We will be in the White Oak meeting space.
- Breakfast and lunch will be provided.
- The agenda/speakers for each event are not set yet, but it will be a mix of presentations about Dravet syndrome (genetics, treatment options, research, current and potential future clinical trials) and how to get involved in the DSF community. Presenters will be DSF staff, medical professionals, industry representatives and other community members. It is a great chance to ask questions about things you may have heard about and wanted to understand more.
- There will also be plenty of time for connecting with other families. It is a great opportunity to meet other caregivers from your area and share local/state resources that are helpful to each other.
- Parking is $15 for the day (paid by credit card/Apple Pay/Google Pay or QR code upon entering)
Saturday August 23 (Evening):
Dinner/Family Activities
We hope to be able to provide an evening dinner event through a sponsorship, but this is not confirmed yet.
Sunday August 24:
Family Activity (TBD)
We hope to be able to plan a fun activity for our families to participate in on Sunday. Stay tuned for details!
Sibling Camp
- While the workshop is taking place, any siblings aged 4-18 have the opportunity to participate in our sibling camp at no additional charge.
- After breakfast with the family, siblings will gather in a meeting room nearby where they will spend some time getting to know each other and talking about what it is like to be Dravet sibling. Then after lunch they will get to take part in a fun activity together.
- We will have plenty of adult volunteers to make this a special experience for them and keep them safe.
- If you have a sibling that is a teen or adult that would be interested in helping with younger siblings, we would love to have them help!
- Registration info for sibling camp will be sent out to all families that registered for each workshop as the date gets closer.
Hotel Information
We have a room block available at a discounted rate of $99.99 per night. This is for a Family Suite which has 2 queen beds plus a sleeper sofa and sleeps 4-6 people.
The last day to reserve a room in the block is July 23, or possibly sooner if the block fills up fast. We can try to add more rooms if available, but may not be able to get the same rate, so please reserve your room early.
Rate Details:
- All guest rooms are subject to a $9.95 per night (plus tax) resort fee (per room, not per person).
- All guest rooms are subject to applicable state and local taxes in effect at the time of check in
- A deposit of one night’s room rate will be charged to your credit card upon booking.
- If the room is cancelled within 72 hours of check-in, 100% of the first room night plus tax will be charged to the credit card or taken from the deposit.
- Check in is at 4:00 pm, check out at 11:00 am.
- Rooms include access to the indoor water park.
- Parking is $15/night.
How to make a reservation:
Call 1-844-485-9653 and tell the reservation agent that you are booking a room under the Block Code 0825DRAV. If you choose to book online, go to www.greatwolf.com and enter the block code into the “Offer Code” box.
Frequently Asked Questions
Am I required to attend all of the events?
No! Your registration is for the Day of Dravet workshop on Saturday. The rest of the events are optional. However, you do need to attend the Saturday evening dinner event to receive the tickets for the Sunday activity.
Can my adult/child with Dravet syndrome stay in the room for the workshop?
Yes! This session is very informal, so it’s fine for the entire family to be in the room. We will have some activities in the back area that may help to keep them entertained (and hopefully some volunteers), but it will be your responsibility to determine whether they are creating a distraction for others. We encourage all siblings to participate in Sibling Camp!
Do I have to stay at Great Wolf Lodge?
No! You are welcome to stay somewhere else, but please be reminded that only hotel guests will be able to enjoy the indoor water park. We know some local families won’t need a hotel at all.
What if we registered, but can no longer attend?
Please email Shannon if you need to cancel your registration.
