You're a VIP!

This page is for the Siblings!

It isn’t easy having a brother or sister with rare epilepsy. When your sibling has a seizure or other health emergency, it can disrupt everything going on in the family, interrupting your plans and requiring you to step in to help or step away for a bit.

You may feel like nobody else your age has to cope with these kinds of challenges. The reality is, there are many, many siblings out there who are just like you: resilient, strong, brave, but also, sometimes, struggling. We in the rare epilepsy community understand and care, and have created something just for you.

VIP Sibling Kits are now available in two age-appropriate versions. These kits are designed especially for VIP Siblings to help you cope with and celebrate how important you are! The VIP Sibling Collaboration Team has developed these kits based on research, expertise, and lots of community input, including from VIP Siblings.

Siblings ages 4-10

Learning about a rare epilepsy isn’t easy for younger siblings. When their brother or sister has a seizure or other emergency, they may feel a little scared or worried. This special VIP Sibling Kit was created to assure them having different emotions is okay and helps celebrate how important and loved they are. Here’s a peek at what’s included in this kit-by-mail.

  • My Sibling Is Special Book
  • Coloring Journal
  • Mood Stickers
  • Rockin’ it / Rough Day Wristband
  • Plush Star

 

Siblings age 11-18

Your older VIP siblings may feel like nobody else their age has to cope with the kinds of challenges they do having a brother or sister with CDD. Designed to reassure your VIP sibling that their thoughts and feelings are normal, this special VIP Sibling Kit also provides encouragement and insight from other rare epilepsy siblings. Here’s a peek at what’s included in this kit-by-mail.

  • Journal
  • Rockin’ it / Rough Day Wristband
  • Door hanger

 

 

 

 

To receive a VIP Kit or Resource Kit for Parents/Caregivers, a parent must be a member of Connect CDKL5 and live in the U.S. If you are not registered, you will be contacted to complete the form before your kit(s) are shipped.

The information collected by International Foundation for CDKL5 Research will not be sold or distributed outside of IFCR and is used solely to verify the identity of and to communicate with VIP Sibling member families as needed. Questions or concerns can be directed to our team.

VIP Sibling
I confirm that I am 13 years or older. (If you are under 13, please have a parent or legal guardian complete this form.)
I would like to receive information on future sibling events or initiatives.
I am a member of Connect CDKL5
I would like to request a Parent & Caregiver Resources Kit

I would like to request Super Sibling VIP Kit(s)

Address where kit(s) should be mailed
Address where kit(s) should be mailed
City
State/Province
Zip/Postal

The VIP Sibling Project also offers a variety of free online materials, many downloadable, for patient organizations to offer their families. Some items are digital versions of contents in the VIP Sibling KIts and Parents & Caregivers Kits.

Thank you to Zogenix for inviting these 10 patient organizations to join them in developing this project. Read more about our incredible journey together.