It started with a butterfly.
The butterfly is the symbol of the Dravet Syndrome Foundation (DSF) and that is where this story begins, within the DSF community. When Zogenix began its first rare disease therapy programs and our advocacy team was introduced in the community, DSF Executive Director, Mary Anne Meskis, gave us profound advice that would lay the groundwork for much important work ahead: “Show up. Listen to families. Listen to their stories.”
So that’s what we did. We showed up for DSF meetings, fundraisers, and events with no agenda other than to listen and learn. With the DSF, we confirmed unmet needs that were brought to light by listening and shared ideas on how we might offer our support.
One significant unmet need focused on the experiences and emotions of well siblings in rare epilepsy families. The VIP Sibling Project began with Zogenix collaborating with the DSF and LGSF communities and others to conduct the Sibling Voices Survey, a research study designed to evaluate the impact of growing up with a sibling who has a rare epilepsy. The survey’s findings led to poster presentations to the clinician and scientific community and to its 2020 publication in Epilepsy & Behavior.*
The Sibling Voices Survey validated what we learned from listening to families. Now it was time to do something about it.
The team set out to create important content to share our research results, raise awareness on the challenges siblings face, and—with the help of the community and healthcare professionals—provide practical guidance to parents and caregivers to help them support their VIP siblings. For those special siblings, we designed collections of fun and useful items—the VIP Sibling Kits—to remind them how important and loved they are.
As always, in the DSF’s spirit of sharing, once the resources and kits were launched in the Dravet syndrome community, it was time to expand their availability.
Enter 10 different, dedicated rare epilepsy communities whose members volunteered many, many hours to make the VIP Sibling Project resources applicable and accessible to more families. Even though we had an excellent place to start, there was much work to do to create resources that were meaningful across many different groups, including figuring out how to make the resources available to communities where there may be limited access to services required to care for rare epilepsy families.
“Nothing for us, without us.” With good reason, we often hear this phrase from patient organisations and their communities. The rare epilepsy patient organisations and the families they support are the experts. Their knowledge and experiences are the foundation for so much important work. Their selfless dedication is what inspired Zogenix to help launch the VIP Sibling Project in the first place.
We hope you find these resources helpful and that your VIP siblings will sense the love and caring from across the rare epilepsy community that inspired this special focus on them.
Proudly sponsored by Zogenix, a growing global pharmaceutical company passionate about taking on the complex challenges of developing therapies with the potential to transform the lives of rare disease patients and their families.
*L. D. Bailey et al., “Psychosocial Impact on Siblings of Patients with Developmental and Epileptic Encephalopathies,” Epilepsy & Behavior 112 (2020): 107377.