A new resource for parents of children with Dravet syndrome (DS), Shine Forward with Dravethas been launched by pharmaceutical company Zogenix (Emeryville, CA). The website includes a unique set of online tips, tools, and advice from families and is designed to inspire deeper connections between parents and siblings of children diagnosed with DS. Zogenix is the maker of the investigational antiseizure medication fenluramine (Fintepla), which is under review by the Food and Drug Admistraion (FDA).
“Families managing life with DS are incredibly strong and resilient,” said Mary Anne Meskis, executive director of the DS Foundation. “As the disease progresses, however, and care requirements intensify, parents and siblings alike may have days when they feel alone, misunderstood, or overwhelmed. 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 and Facebook page 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 DS Foundation resources.
“We collaborated with the Dravet community to conduct pioneering research into the impact of DS 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.”
Vanessa Baute Penry, MD; Rachana Gandhi Mehta, MD; and Fatemeh Sadeghifar, BS
Melissa W. Ko, MD; Kevin E. Lai, MD; and Devin D. Mackay, MD