EMERYVILLE, Calif., June 12, 2020 (GLOBE NEWSWIRE) -- Zogenix, Inc. (NASDAQ: ZGNX), a global pharmaceutical company developing rare disease therapies, today announced the introduction in the U.S. of a new suite of materials to better support and celebrate siblings of those living with Dravet syndrome. Dravet syndrome is a rare, severe childhood-onset epilepsy marked by frequent debilitating seizures, lifelong developmental and motor impairments, and an increased risk of sudden death.
The severity and unpredictability of Dravet syndrome, coupled with around-the-clock concern for the family member with Dravet syndrome, can cause significant challenges for all members of the family and increase a sibling’s risk for anxiety and depression. These new materials, created in collaboration with the Dravet Syndrome Foundation, other epilepsy experts, and mental health professionals, include printed brochures to help parents and caregivers recognize when their child, teen, or young adult may need more support. The materials also include a boxed VIP kit and other resources to help siblings work through complex emotions they may be experiencing and remind them how important they are.
“The extra care that a family member with Dravet syndrome needs can have a huge impact on a family’s quality of life, compounded these days by the uncertainties of navigating a global pandemic,” said Mary Anne Meskis, Executive Director of the Dravet Syndrome Foundation. “We are very pleased to partner with Zogenix to address the lack of resources in this area and put sibling care in the spotlight.”
The Parent & Caregiver Resources include:
- Guides on how to recognize signs that their children with a Dravet syndrome sibling may need extra support, ideas for staying connected, and suggestions on when and how to ask for help.
- Customizable information sheets that families can share with a sibling’s teachers and others to help them understand what Dravet syndrome is, how it might affect a sibling, and what to do when the family must attend to the child with Dravet syndrome when affected by seizures and medical emergencies.
- A pad of love notes parents can put in lunch boxes and back packs for siblings who could benefit from a reminder of how important they are.
The VIP Sibling Kits for children ages 4-18 contain:
- Journals with prompts for self-expression
- Positive affirmation coloring books
- VIP “Rockin’ It / Rough Day” wrist bands to help them show their mood
- VIP stress putty
- Kits for younger siblings (ages 4-10) also include a plush star and the Dravet Syndrome Foundation’s book My Sibling Is Special
- Kits for older siblings (ages 11-18) include a reversable “I need space / Come on in” door hanger and a VIP smart phone pop socket
The materials were presented to the U.S.-based Dravet syndrome community this week in a special Dravet Syndrome Foundation webinar and will be available through the Dravet Syndrome Foundation starting August 1, 2020.
“My colleague on this project, Laurie Bailey, and I have learned a lot – and shed a few tears – as we heard from so many siblings how Dravet syndrome affects their lives,” said Carla Schad, M.D., M.S., Senior Director of Medical Science Liaisons at Zogenix. “These siblings are brilliant, feisty, witty, devoted, and compassionate. They love their families and want to help care for and protect their sibling living with Dravet. We are so proud to help ensure they feel equally supported, loved, and cared for.”
About the Zogenix Sibling Voices Initiative
Zogenix has worked with the Dravet Syndrome Foundation, the broader Dravet community, and a variety of other Dravet syndrome and mental health experts to better understand and address the impact of rare epilepsies on caregivers, families, and siblings. Other materials in the resulting Sibling Voices library include infographics summarizing research findings, infographics for siblings to let them know they are not alone, sibling workshops and events, and presentations of data to clinicians, parents, and advocacy groups around the world. In addition, Zogenix recently launched the Shine Forward with Dravet website and Facebook page in the United States, which offers tips and tools to inspire and uplift Dravet syndrome parents and caregivers and help them stay connected to all members of the family.
Zogenix is a global pharmaceutical company committed to developing and commercializing therapies with the potential to transform the lives of patients and their families living with rare diseases. The company has two late-stage development programs underway: FINTEPLA® (ZX008, fenfluramine oral solution) for the treatment of seizures associated with Dravet and Lennox-Gastaut syndromes, two rare and often-catastrophic childhood-onset epilepsies, and MT1621, a novel substrate enhancement therapy for the treatment of TK2 deficiency, a rare genetic disorder.
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