With the FDA’s first approval for a treatment for Rett syndrome now under its belt, Daybue maker Acadia Pharmaceuticals has debuted its latest effort to raise awareness around the rare disease.
“Magnolia’s Guide to Adventuring” is a documentary series following Magnolia Tesler, a 13-year-old with the genetic neurological disorder. Rett syndrome almost exclusively affects girls and women and can impair their ability to walk, talk and control their hands, while often causing involuntary hand movements. It’s estimated to affect between 6,000 and 9,000 people in the U.S., though only about 5,000 have been diagnosed, per Acadia.
In each segment of the 10-episode series, Magnolia and her parents will travel around the U.S. to meet another family living with Rett syndrome, who will join the Tesler family on an adventure using adapted equipment. The first episode, for example, sees the Teslers travel to meet the Randol family of New Hampshire, where Magnolia is able to experience downhill skiing on an adapted sled. Upcoming episodes, which will drop about every two weeks, will see Magnolia try out cross-country skiing, ice skating and horseback riding.
In a promo for the docuseries, Magnolia, who speaks using an eye gaze computer, says, “They used to say kids with Rett syndrome couldn’t surf or ski. They would say we couldn’t swim or climb. But what if we can? I’m Magnolia—come adventure with me.”
The series was created by the teen’s parents, Jenny and AJ Tesler—the latter of whom boasts more than two decades’ experience as a producer and director for clients like Netflix, Lionsgate and Comedy Central—with Acadia’s support. The Teslers previously created the YouTube series and documentary film “Magnolia’s Hope” to document their daughter’s experience with Rett syndrome.
“We believe it’s crucial to showcase the incredible spirit of individuals living with Rett syndrome and all the things they are capable of, despite their symptoms,” AJ Tesler said in Acadia’s announcement of the series premiere this week.
“It’s been a long journey for our family since Maggie’s Rett diagnosis, and we’ve learned how to make the most of every day by adapting adventures that we can enjoy as a family,” he continued. “She inspired us to make this series as a celebration of the uniqueness of each person and family affected by Rett syndrome in hopes that we can inspire all families to create their own adventures.”
“Magnolia’s Guide to Adventuring” is housed on Acadia’s “Rett Revealed” website, which went live in late 2022 as part of a campaign designed to both raise awareness about the disease and spotlight the individuality of each person with Rett syndrome.
Under the docuseries tab on the site, in addition to viewing each episode, visitors can also request an “adventure sticker journal” where families can plan and document their own Magnolia-inspired adventures and how they can be adapted for their children with Rett syndrome.
“At Acadia we have had the privilege of working closely with the Rett syndrome community and have learned a lot about the lives of individuals and families living with this condition. Their journeys teach us that, despite the challenges they may face, they possess remarkable abilities often unseen at first glance,” Brendan Teehan, Acadia’s COO and head of commercial, said in the announcement. “We are honored to support the Tesler family in their work to redefine perceptions and highlight the remarkable abilities and spirits of individuals with Rett syndrome.”