DSF’s 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. They take place on opposite years of our biennial conference. We host one event in each of our five regions in order to give more families the opportunity to participate.
Mountain Region – March 29
Morgan’s Wonderland – San Antonio, TX
Southeast Region – April 12
Wilderness at the Smokies – Sevierville, TN
West Region – June 21
Point Defiance Zoo & Aquarium – Tacoma, WA
Midwest Region – August 23
Great Wolf Lodge – Gurnee, IL
Northeast Region – September 20
Hershey Lodge – Hershey, PA
Here’s an overview of what you can expect at our 2025 workshops:
Day of Dravet Conference
- The Day of Dravet workshop is a one-day family friendly conference which will take place on a Saturday from 9 am to 4 pm. We will provide both breakfast and lunch. Your loved one with Dravet syndrome is welcome to stay in the room since these sessions are informal. We will have some toys/activities in the back of the room to help them stay entertained.
- 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.
- Thanks to our generous sponsors, the registration fee is only $25 per family. Click here to register!
Sibling Camp
- While the workshop is taking place for the rest of the family, any siblings aged 4-18 have the opportunity to participate in our sibling camp at no additional charge. After breakfast, siblings will go to another room 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 participate in that way!
- Registration info for sibling camp will be sent out to all families that registered for each workshop as the date gets closer.
Saturday evening activity – NEW FOR 2025!
- Thanks to a generous sponsor, this year we will have an evening activity after the workshop! We are still working on the details for each event, but they likely will be providing a dinner and some fun activities for our families on Saturday evening at the hotel.
Sunday activity – NEW FOR 2025!
- We are working on planning a fun activity for our families to participate in on Sunday. For the Mountain event, it will be visiting Morgan’s Wonderland since the previous day only the siblings will get to enjoy the park. We should have plans for the other regions soon!
- Tickets for this activity will be provided by the sponsor also at no charge to our families, but you do need to attend the Saturday evening event if you plan to participate on Sunday.
- We realize many families may not be able to stay for something on Sunday due to travel and commitments with work/school, but we hope this will be a great chance for families that are able to stay to spend more time together.
Travel Info:
- We know many of you will have to travel to attend and that will require staying overnight. We will have a room block with a discounted rate at a local hotel near each event. For the events being held at a resort (Southeast, Midwest, Northeast) it will be at the same resort as the workshop.
- We will share the information soon with the hotels, rates, and instructions for how to reserve a room. If you find a better rate somewhere else or prefer to stay at a different hotel, that is fine too!
We are very excited to offer these amazing events again in 2025 and hope that many families can participate. We realize that our regions are very large and these locations will not be convenient to everyone, so that’s why we do move the locations around every two years so that hopefully at some point all families have an event that is not too far away.
Please visit dayofdravet.org for updates as the events get closer! If you have any questions, email Shannon.
