In commemoration of Rett syndrome awareness month this October, Acadia Pharmaceuticals is launching an awareness campaign to shine a light on patients' journeys and show that each person living with the devastating neurological disease is unique.
Coined Rett Revealed, the campaign kicked off with a website featuring a photo mosaic designed by Emily Shifflet, an artist living with the disease. The campaign is also asking people in the Rett community to submit photos of themselves living their best lives, and these submissions will be included in the final art piece.
Due to her condition, Shifflet, now 27 years old, creates artwork using a communication device, installed on a computer, which she operates with her eyes. Her artwork has been exhibited at the Penn State Hershey Medical Center and the Arc of Pennsylvania, with proceeds benefiting organizations researching Rett syndrome. Shifflet's artistic journey is captured on her website.
“We wanted to find a way to demonstrate how the individual contributions to Emily’s artwork convey the uniqueness of every single person impacted by Rett syndrome,” Brendan Teehan, executive vice president, COO, head of commercial at Acadia Pharmaceuticals, said of the campaign in an interview. “While the ‘Confetti’ painting was created by an individual artist, Emily Shifflet, a young woman living with Rett, the campaign will ultimately provide a mosaic made up of individuals within the Rett community and the moments that showcase their uniqueness and abilities.”
In support for Rett syndrome awareness month, Acadia will light up its corporate headquarters in San Diego and Princeton in purple. The pharmaceutical company will also back 15 events across the country that the International Rett Syndrome Foundation and the Rett Syndrome Research Trust organized.
And for the Rett Revealed campaign, Acadia is distributing pinwheels and postcards with QR codes that enable participants at the events to quickly access the website and upload their images. The Rett Revealed website shows a mosaic in grayscale, and following the event's wrap-up in early November, the full-color mosaic of the final crowd-sourced images will be revealed.
The campaign will also leverage social media and digital channels, as well as engage with advocacy partners. Rett syndrome is leading to the loss of communication skills, purposeful hand use, gait abnormalities and stereotypic hand movements.
Rett patients become non-verbal as the condition progresses, and parents and caregivers report that their children are often underestimated or unfairly marginalized, Teehan explained. So through this campaign, Acadia is able to showcase some of the abilities that patients possess. Thus far, some of the photos received include people with Rett syndrome biking, swimming, attending prom, horseback riding and trick or treating, to name a few.
There are no FDA-approved treatments for Rett, but Acadia submitted its drug, dubbed trofinetide, to the FDA for approval consideration in July. The company is hoping to score approval for patients as young as 2 years.