Dravet Activity Room

The Dravet Activity Room is sponsored by Ciara’s Light Foundation and offers fun activities for Dravet patients and their caregivers on Friday, June 24, and Saturday, June 25.

The Activity Room is structured like a day camp with two full days of activities, but also with flexibility for campers to come and go as needed. There are a variety of activities which are designed to entertain and accommodate a range of abilities. We want to bring as much joy as possible to those with Dravet during the conference. Activities are led by Lori O’Driscoll unless noted otherwise.

Breakfast, lunch and snacks will be provided. Please indicate any dietary needs and/or allergies on the registration form. We will do our best to accommodate those needs.

Registration is limited to those with Dravet syndrome and a caregiver who must be 18 or older and present at all times. Please note, none of our activities are drop off and there are no medical professionals on site.

Register to Participate!

Camp Agenda

Subject to change
Activities with ** require advanced registration

Friday, June 24Activity
8:00am-8:30amBreakfast
8:30am-9:00amBreakfast BingoIncluding fun prizes for all – including the caregivers!
9:00am-10:00amCosmic Yoga
10:00m-11:00amMusic Therapy with Sonny** (Session 1)Led by Cook Children’s Sonny Burgess, Director of Clinical Performing Arts. Join us for 1, 2, 3 or all 4 sessions where you will choose to play the ukulele or drums (which you get to take home!) Campers are invited to join us in a performance at Saturday night’s dinner.
11:00am-12:00pmArt Project: Butterflies**
12:00pm-1:00pmLunch & A Movie
1:00pm-2:00pmGame Time
2:00pm-3:00pmMusic Therapy with Sonny** (Session 2)Led by Cook Children’s Sonny Burgess, Director of Clinical Performing Arts. Join us for 1, 2, 3 or all 4 sessions where you will choose to play the ukulele or drums (which you get to take home!) Campers are invited to join us in a performance at Saturday night’s dinner.
3:00pm-5:00pmBuild A Bear Workshop
Sat, June 25Activity
8:00am-9:00amBreakfast & Butterfly Release
9:00am-10:00amBreakfast BingoIncluding fun prizes for all – including the caregivers!
10:00m-11:00amMusic Therapy with Sonny** (Session 3)Led by Cook Children’s Sonny Burgess, Director of Clinical Performing Arts. Join us for 1, 2, 3 or all 4 sessions where you will choose to play the ukulele or drums (which you get to take home!) Campers are invited to join us in a performance at Saturday night’s dinner.
11:00am-12:00pmArt Project**
12:00pm-1:00pmLunch & A Movie
1:00pm-2:00pmCosmic Yoga & Storytime
2:00pm-3:00pmMusic Therapy with Sonny** (Session 4)Led by Cook Children’s Sonny Burgess, Director of Clinical Performing Arts. Join us for 1, 2, 3 or all 4 sessions where you will choose to play the ukulele or drums (which you get to take home!) Campers are invited to join us in a performance at Saturday night’s dinner.
3:00pm-5:00pmCarnival**It’s carnival time complete with balloon artists, spin art, caricatures, games, carnival treats and more!