VIP Siblings and www.vipsibling.com, New Resources to Support Brothers & Sisters of Those Living with Severe, Rare Epilepsies, Now Available from Zogenix and 10 Advocacy Groups
EMERYVILLE, Calif., July 14, 2021 (GLOBE NEWSWIRE) — Zogenix, a global biopharmaceutical company developing rare disease therapies, and ten U.S. advocacy groups today announced the launch of VIP Siblings, a new website and suite of materials created to celebrate and deepen support for siblings of adolescents living with rare and severe forms of epilepsy. The spirit of the materials is captured by the slogan “Siblings. Supported.”
These rare epilepsies (also called developmental epileptic encephalopathies, or DEEs) begin early in life and are characterized by frequent, unpredictable seizures, medical emergencies, developmental impairments, and, in some cases, an increased risk of premature death. As a result, siblings of diagnosed children may grow up in an environment permeated by stress, anxiety, and fear for their loved one’s well-being.
“For families living with a loved one who has a rare epilepsy, the siblings are truly the unsung heroes. So often they’re asked to make last-minute changes to their plans or take a back seat to their sibling’s seizures,” said Tracy Dixon-Salazar, Executive Director of the Lennox-Gastaut Syndrome Foundation, one of the organizations partnering to create VIP Siblings. “We are so proud to work across organizations to recognize these champions and express gratitude for the amazing human beings they are.”
Zogenix partnered with 10 advocacy groups to create the materials: the Dravet Syndrome Foundation, DEE-P Connections, Doose Syndrome Epilepsy Alliance, Dup15q Alliance, International Foundation for CDKL5 Research, International SCN8A Alliance, LGS Foundation, PCDH19 Alliance, SLC6A1 Connect, and TSC Alliance. The groups’ shared goal is to help parents better recognize and manage signs of sibling stress while giving siblings themselves tools, materials and activities that help express their feelings and hear from others that they are valued and not alone.
In addition to input from these expert organizations, the VIP Sibling resources also reflects findings from the company’s Siblings Voices Study, which identified the impact rare epilepsies had on many siblings’ lives, such as more than half experiencing feelings of unhappiness, irritability or grumpiness.
“We are honored to have worked with these dedicated, inspiring organizations to help siblings feel heard and supported, directly and through their support circles,” said Laurie Bailey, Associate Director of Medical Affairs at Zogenix. “For that reason, the resources include educational materials and emergency planning resources for parents and caregivers, as well as journals and other tools for siblings, including positive messages and words of encouragement from adult siblings in the rare epilepsy community. We look forward to continuing our partnerships with these essential organizations.”
The VIP Sibling website (www.vipsibling.com) and downloadable materials 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.
Important Note: In addition to using the resources provided, families are encouraged to speak to a healthcare professional about ways to support their siblings of a child living with a rare epilepsy.