‘Shine Forward with Dravet’ Is Online Support for Families of Patients
Note: This story was updated June 15, 2020, to note that Ashish Sagrolikar is Zogenix’s chief commercial officer, not its CEO.
The new resource, which can be accessed through its website or on Facebook, provides not only practical care advice for children with Dravet syndrome, but addresses the emotional needs of family members and encourages community participation.
Dravet syndrome is a rare genetic condition that is characterized by prolonged seizures. These symptoms can manifest within the first year of life and occur throughout the patient’s lifetime. The seizures can be unpredictable, severe and difficult to treat, causing emotional and logistical challenges for families.
Zogenix, the developer of the experimental therapy Fintepla (formerly ZX008), initially launched a research initiative to understand the impact of Dravet on patients’ siblings.
Their study, and others, found that siblings experience higher levels of stress, anxiety, or fear, and that 47% reported unhappiness, 49% reported having nightmares, and 35% of adult siblings had clinical depression.
Building on this research, the company built the “Shine Forward with Dravet” resource to support the parents and siblings of people with the condition.
“We collaborated with the Dravet community to conduct pioneering research into the impact of Dravet syndrome on siblings,” Ashish Sagrolikar, Zogenix’s chief commercial officer, said in a press release. “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.”
The website offers specific tips for both parents and siblings, designed to educate families and to formulate best practices for care. One example of this is the website’s Seizure Planning Tool, which helps family members, specifically siblings, prepare for a seizure event.
Shine Forward with Dravet also offers an array of activity suggestions for families with Dravet, including singalongs and dance parties for young children, and video games and puzzles for older children.
The resource also spotlights the impact of Dravet on family members and seeks to provide emotional support.
“Shine Forward with Dravet” encourages communication and support within the Dravet community, and the website includes a page specifically for family members to share their advice.
For situations that require deeper support, the Shine Forward website features links to resources provided by the Dravet Syndrome Foundation.
“Families managing life with Dravet are incredibly strong and resilient,” said Mary Anne Meskis, executive director of the 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.”
By addressing the logistical and emotional needs of families with Dravet, Zogenix’s new resource is aimed at inspiring and supporting the Dravet community.