VIP Siblings and www.vipsibling.com, New Resources to Support Brothers & Sisters of Those Living with Severe, Rare Epilepsies...
July 14 2021 - 4:01PM
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.
About ZogenixZogenix is a global
biopharmaceutical company committed to developing and
commercializing therapies with the potential to transform the lives
of patients and their families living with rare diseases. Learn
more at www.zogenix.com.
CONTACTS:ZogenixMelinda
BakerSenior Director, Corporate Communications+1 (510) 788-8732
| corpcomms@zogenix.com
MediaTrish McCallAccount Supervisor, Porter
Novelli+ 1 (805) 390-3279 | trish.mccall@porternovelli.com
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