Affecting an estimated 600 Americans, cystinosis is an inherited condition that leads to a build-up of the amino acid cystine, which then results in the formation of crystals within cells. The crystals can impact every cell and tissue of the body and, left unchecked, can damage a patient’s kidney, thyroid, eyes, muscles, brain, heart and other organs.
Cystinosis is treatable with cystine-depleting agents. While patients with infantile onset cystinosis (95% of cases) used to have lifespans of less than ten years, advances in cystine-depleting therapies have helped people live with the disease into adulthood.
Yet awareness remains low, and understanding of the condition among children afflicted with it is lower still. To address those lingering issues, Horizon Therapeutics and agency partner Real Chemistry created “The Quest for Crystals,” a week-long series of events for the Cystinosis United Facebook community. The activities were rolled out between August 2 and August 6.
“These kids are diagnosed at a young age and parents have trouble talking about the disease and explaining it to them,” says Lauren Gottlieb, director of Procysbi marketing at Horizon Therapeutics. “And so often they don’t, and the kids don’t really understand it.”
Horizon manufactures cystinosis drug Procysbi. Since 2016, the company has worked alongside the cystinosis community on events and partnered with advocacy organizations, among them Our Odyssey, the Cystinosis Research Network, the American Kidney Fund and the Center for Chronic Illness, to educate and raise awareness.
All of those groups were involved with “The Quest for Crystals,” The effort was divided into a series of nightly activities, including trivia, crafts, read-along sessions and a Q&A panel.
The week culminated with the premiere of “The Quest for Crystals,” an animated short starring Ruby, a cystine-depleting agent portrayed as a red-headed adventurer exploring a human body in her rocket ship. Along the way, she gathers crystals from cells before they pose a danger.
Gottlieb said Ruby has proven an excellent spokesperson, especially when it comes to forging strong bonds with her original target audience of young children.
“Everything we do is based on learning from the community. Listening to individual stories is what led to the development of Ruby – the book, the animation and now this premiere week,” Gottlieb explained. “As we get positive feedback on the content, we try to figure out new ways to get it out there. Some people like to read a book, some people like to watch a movie and some people prefer to engage with content by doing a craft.”
A key element of the campaign was an activity box available for free to anyone who requested it. It included stickers to decorate Ruby’s rocket on craft night, a worksheet for trivia night and bags of microwave popcorn and M&Ms for the premiere of the short film.
In the wake of the week’s events, Gottlieb believes that Ruby succeeded in conveying an important message to her audiences. “It’s that there’s a friend out there, someone who gets me,” she said. “There is more we want to share in this disease space and there will be more opportunities with these characters.”
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