All rare epilepsy families face challenges. Caring for a child with a rare epilepsy requires considerable energy, time, and flexibility. And that constant care has an impact on every member of the family. Siblings who have a brother or sister with a rare epilepsy are often unselfish, dedicated, and demonstrate an amazing ability to see beyond the challenges, exhibiting understanding and compassion beyond their years. As helpful and involved as they may be with their brother or sister, siblings have needs and concerns of their own. Sometimes, they feel alone.
In 2017, many members of the Dravet syndrome 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. From there, DSF had the opportunity to work with Laurie Bailey, Associate Director of Medical Affairs at Zogenix, and members of her team to develop VIP Sibling resources, which DSF has been distributing to siblings and parents in our community through our Super Siblings program, since August of 2020.
The significant value of these resources could not be overlooked, so in 2021, Zogenix partnered with 9 additional advocacy organizations to help expand the reach of these resources and adapt them for use in the broader rare epilepsy community. This working group created three very special kits, useful forms, digital downloads, and much more. The VIP Sibling website has downloadable materials that can be accessed by the public, with the exception of a secured section for siblings. In addition, the partner advocacy organizations will have a limited quantity of printed parent/caregiver materials and VIP Sibling Kits tailored to older and younger age groups to distribute to their members.
To learn more and to access these free resources, please visit www.vipsibling.com.
DEE-P Connections recently hosted a webinar that talks about the development of these resources and shares input from siblings and patient advocates. You can watch the video on demand at this link.