New Sibling & Parent Resources

Many members of our community including parents and siblings (ages 9 and up) participated in a research study called the Sibling Voices Survey. Findings from the study were presented at the 2018 DSF Conference in Aurora, CO. An infographic of the findings can be found here. And now, thanks to continued collaboration with Zogenix, we are able to provide two important new resources to support siblings and their families.

The Parent & Caregiver Resource Kit was created based on research and inspiration from the community in conjunction with guidance from HCP’s specializing in Dravet Syndrome and mental health experts. We hope it can offer support and resources for families who are impacted by Dravet syndrome.The kit includes:

  • The Impact of Dravet Syndrome on Siblings booklet
  • Sibling Support Guide
  • My Family is Living with Dravet is a tear-pad
  • Love Notes

The VIP Sibling Kit was created to remind siblings how important they are, and offer tools that can help calm and provide simple communication tools that let those around them know how they’re feeling. Two versions of the VIP Siblings Kit have been created, one for sibs ages 4-10 and one for ages 11-18. Both kits include:

  • VIP Sibling Journal
  • Positive Affirmation Coloring Book
  • VIP Stress Putty
  • Rockin’ / Rough Day Wristband
  • and more!

More details about the program and links to register can be found here.

This program is proudly sponsored by: