There is just one-week left to register and join us at this year’s DSF Family & Professional Conference in Fort Worth, Texas, on June 23-25th, in collaboration with Cook Children’s Medical Center.
While this event is important for all of our community stakeholders, it is such a special opportunity for our patient families. Along with a fantastic line up of educational sessions on clinical care and current research, we also have sessions and workshops that help caregivers and families in the day-to-day management of this disease.
For Dravet patients: The Dravet Activity Room, sponsored by Ciara’s Light Foundation
Register for 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. There is no charge, but please register by Friday June 17th.
For Siblings: DSF Super Sibling Cam, sponsored by Zogenix, a part of UCB
Camp is available for siblings of a child with Dravet syndrome, whose parent(s) are registered to attend the conference.Campers must be at least 4 years old and potty-trained to attend.The cost for camp includes all activities, as well as breakfast, lunch and snacks. Onsite activities and offsite field trips are planned for participants. If you do not want your child to participate in the field trip, you will need to arrange for separate childcare for your child during that time. No children (or patients with Dravet syndrome) are permitted in sessions, as they are being recorded. There is a $50 fee for the two day camp, but camp scholarships are available for families if this poses a financial hardship. Please register by Friday, June 17th.
For Parents: New to Diagnosis and Long Term Adult Care Planning Workshops
Participate in an afternoon workshop that aligns with your loved one’s needs. For those new to diagnosis, we will offer a workshop that focuses on the importance of building a Care Binder and making sure you are seizure-ready, with monitors, diaries and seizure action plans.
For our caregivers of adults, we will offer a workshop that focuses on Person-Centered Planning, including daily life after High School and establishing a Lifelong Support Network. Learn about topics that are important to you while interacting and connecting with other parents at a similar point in their child’s medical journey.
For Families: Evening Social Activities
Each night we bring everyone together for dinner and socializing!
On Thursday evening – after dinner, join us for The Balancing Act Presents: Behind the Mystery of Dravet Syndrome, featuring Dr. Linda Laux and the Raia Family. This special segment is sponsored by Biocodex.
On Friday evening – after dinner we will have a Dravet Dance Party with music and fun for everyone. Our Dravet Dance Party is sponsored by Zogenix, now a part of UCB.
On Saturday evening – after dinner we will have carnival games, face painting, and balloon animals sponsored by Jazz Pharmaceuticals.