Children with Lennox-Gastaut Syndrome, a severe form of epilepsy, and their parents can now lean on Amazon Alexa for support — and some fun.
Eisai developed a first-of-its-kind Alexa Skill to support these patients and their caregivers. Called Ella the Jellyfish, the skill gives affected children new ways to play that are tailored for their needs.
The skill, which is activated by saying “Alexa, open Ella the Jellyfish,” has games, stories and meditations for patients. Children with Lennox-Gastaut Syndrome often have varying intellectual and physical disabilities, so providing various levels of engagement is crucial. Kids can play active games like Freeze Dance or listen to calming music and meditations.
“A lot of children who have these kinds of disabilities have an enjoyment of language through music,” said Dr. Michael Chez, a medical adviser on the project. “Music by itself gives them a sense of their body, and most of my patients really enjoy music. The level of games and interactions that were picked out move at speed appropriate for what we think their motor and mental processing is; that helps them play at an appropriate rate.”
Eisai is partnering with epilepsy advocacy organizations and promoting the skill on social media to encourage patients and caregivers to download and use it, said Alex Scott, chief strategy officer of Eisai’s neurology business group.
Scott said his team decided to use voice technology because it’s a widely available and easily accessible tool that many people have in their homes. He said the idea came about through Eisai staff’s volunteer time with the LGS community, when they learned about gaps that needed to be addressed.
The goal for LGS patients is to provide them with a sense of independence and calm. For caregivers, Eisai hopes Ella can give them a different way to engage with their child and even a break when needed.
“These patients don’t have a lot of games or things they can do themselves, and [Ella is] something that gives them a sense of independence and fun,” Scott said. “They can say this is my special area, my world that I am the game master of. For family members, it’s two-fold, a way to engage and play with the patient, and it’s something to give them respite if they need a break to do something else and they know their child is doing a meditation or sing-along.”
Chez, who is director of the pediatric epilepsy and autism programs and pediatric research at Sutter Neuroscience Research Consortium, said Ella can also teach LGS patients communication skills and self-soothing and self-entertaining techniques.
Eisai is developing treatment for LGS, which is in late-stage trials. The company is studying the effectiveness of its antiepileptic drug Fycompa in LGS patients.
“The LGS population needs to be recognized and engaged because they often feel isolated,” Chez said. “The people in this community really do want to engage and show their children can participate with other children and have activities to help engage with their siblings. It’s a nice effort by pharma and physician advisors to bring together resources and the Amazon skill to offer some help to this community. The best way to do that is both treatment for a mental issue, as well, and giving people the social support they need.”