Today, Project Sleep issued the following public statement after receiving many questions from community members about the upcoming feature-length movie, Ode to Joy.
Project Sleep’s Public Statement: Narcolepsy Portrayal in Film, Ode to Joy
Los Angeles, CA, April 10, 2019 — Project Sleep would like to inform our supporters and the narcolepsy community that we are aware of Ode to Joy — an upcoming feature film depicting a main character portrayal of narcolepsy with cataplexy. The portrayal was inspired by a 2010 NPR This American Life segment titled “I’ve Fallen In Love and I Can’t Get Up.”
Project Sleep is committed to advancing our bold goals to increase the public’s knowledge of narcolepsy to 80% by 2025; reduce delays in proper diagnosis from 8-15 years to two years by 2030; and reduce stigma for those living with narcolepsy. We understand the primary goal of film is entertainment, while also recognizing the role entertainment plays in helping to shape societal perceptions of health conditions like narcolepsy. We have been in conversation with the producers over the past few months about possible opportunities to work together to raise awareness. We look forward to continuing this conversation with the film’s team and continuing to do everything we can to amplify the voices of people living with narcolepsy and their loved ones through our organization’s programming and public relations efforts.
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Friends, I look forward to updating you on this topic as soon as possible. Thank you for your support of this effort along with Project Sleep’s on-going proactive efforts to build a brighter future for all people with narcolepsy. Project Sleep’s programming includes: the Rising Voices fo Narcolepsy leadership training program, Narcolepsy: Not Alone campaign, Jack & Julie Narcolepsy Scholarship. Plus, our latest new effort – joining together with 21 other organizations on six continents to establish World Narcolepsy Day for Sept. 22, 2019!
Sending big hugs to the community this week and thank you for your kindness, your support carries me through many challenging moments.