Northeast Region
Day of Dravet
Saturday, September 20
Hershey Lodge (Hershey, PA)
Event Information and Schedule
Saturday September 20:
Day of Dravet Workshop 9 am – 4 pm
- We will be in the Great American Hall 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 free.
Saturday September 20 (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 September 21:
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 $289 (or $249) per night. These are the room types available:
- Queen/Queen – $289/night
- Deluxe King (includes a sleeper chair)* – $249/night
*There are a very limited number of king rooms available, so they will be gone fast.
The last day to reserve a room in the block is August 20, 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:
- The rate is subject to all applicable taxes, including six percent (6%) PA State Hotel Tax and five percent (5%) Dauphin County Hotel Room Rental Tax.
- Credit cards are charged a one night’s advance deposit including tax at time of booking a room reservation.
- Cancellations must be made 72 hours prior to the day of arrival. No changes or cancellations are permitted within 72 hours of arrival. If you cancel after that time, you will lose your one night deposit.
- Check in is at 4:00 pm, check out at 11:00 am.
- Rooms include access to the indoor water park.
- Parking is free.
How to make a reservation:
Rooms can be reserved using this link:
https://www.hersheylodge.com/qr/5B3I7I3LCF/
Guests who prefer to call to make reservations may call 855-729-3108 and ask for the room block for the Dravet Syndrome Foundation at the Hershey Lodge, September 19-21, 2025. The reservations team is available seven days a week from 8 AM – 8 PM to assist you.
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 Hershey 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.
