Unique tips and tools informed by the Dravet syndrome community are designed to help parents and siblings of a child with Dravet stay positive and connected.
EMERYVILLE, Calif., May 15, 2020 (GLOBE NEWSWIRE) -- Zogenix, Inc. (ZGNX), a global pharmaceutical company developing rare disease therapies, today announced the U.S. launch of Shine Forward with Dravet, a unique set of online tips, tools, and advice from Dravet families designed to inspire deeper connections between parents and siblings of children diagnosed with Dravet syndrome.
Dravet syndrome is a rare 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 the disease, coupled with around-the-clock concern for the diagnosed child’s well-being, can present significant emotional and logistical challenges for all members of the family.
“Families managing life with Dravet are incredibly strong and resilient,” said Mary Anne Meskis, Executive Director of the Dravet Syndrome Foundation. “As the disease progresses, however, and care requirements intensify, parents and siblings alike may have days when they feel alone, misunderstood, or overwhelmed. Zogenix’s Shine Forward with Dravet offers support with uplifting insights and approaches from families who understand and share their journey.”
Shine Forward with Dravet includes a website (www.shineforwardwithdravet.com) and Facebook page (https://www.facebook.com/ShineForward/) with information for parents, tips for day-to-day coping, and approaches for effectively listening to and appropriately involving their children of different ages. The sites also feature a growing collection of activities parents can do at home with their children. For times when deeper expertise is needed, the sites include links to Dravet Syndrome Foundation resources (www.dravetfoundation.org).
“We collaborated with the Dravet community to conduct pioneering research into the impact of Dravet syndrome on siblings,” said Ashish Sagrolikar, Chief Commercial Officer at Zogenix. “Now, we’re honored to partner again to develop Shine Forward with Dravet, a resource that, we hope, will help make life a little easier for every member 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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