Narcolepsy is a chronic neurological disorder of the sleep-wake cycle that affects about three million people worldwide. However, public understanding of narcolepsy is limited, with media portrayals associating narcolepsy with comical sleepiness rather than a medical condition. As a result, people with narcolepsy (PWN) often face stigma and isolation as they are mislabeled as antisocial, faking and unmotivated. Misconceptions and low awareness of narcolepsy also perpetuate delays in proper detection and diagnosis.
At the same time, communicating about narcolepsy can be challenging. Many aspects of living with narcolepsy are invisible to peers, family, teachers and even medical professionals. The Rising Voices of Narcolepsy program aims to address this unmet need in the narcolepsy community.
This program will serve the dual purpose of fostering a new generation of narcolepsy patient-advocates spreading awareness while also empowering participants. Personal stories of health and illness are invaluable public education tools. Audiences are much more likely to empathize and retain information when it is delivered by someone with lived experience, giving a real “face” to medical terminology and statistics. Moreover, for those with “invisible illnesses” like narcolepsy, sharing one’s story is a powerful way to find connection, validation and understanding. Participants will not only gain valuable communication skills, but will also build confidence in their unique and important stories.
The first set of training sessions will take place during summer of 2017.
- Speaking Session 1: an in-person workshop focused on public speaking in Los Angeles, California on Saturday, May 27th 2017 from 10:00am to 5:00pm with breaks. You will also be required to complete 5-6 hours of pre-workshop homework. NOTE: You will be responsible for their own travel costs.
- Speaking Session 2: a three-week online course focused on public speaking that will run from June 12th to June 30th 2017. This training will take about 4-5 hours each week on your own schedule to complete (expect a total of 12-15 hours).
- Writing Session 1: a three-week online course focused on writing that will run from July 10th to July 28th 2017. This training will take about 4-5 hours each week on your own schedule to complete (expect a total of 12-15 hours).
- Writing Session 2: a three-week online course focused on writing that will run from July 31st to August 18th 2017. This training will take about 4-5 hours each week on your own schedule to complete (expect a total of 12-15 hours).
In addition to training session time commitments listed above, participants will be expected to devote about 20 – 30 hours over the next year to successfully complete the program’s goals and exercises.
The application deadline was February 24th, 2017 and we will be informing applicants of our decision by April 2017. We are evaluating qualified applicants based on enthusiasm and capability and aim to have a diverse set of participants that represents a wide range of demographics and backgrounds.
The Rising Voices of Narcolepsy program is being co-created and led by Project Sleep founder Julie Flygare and health communications specialist Rebecca Fuoco. Project Sleep is deeply grateful to Jazz Pharmaceuticals for a generous grant to help support the development of this new program. Through the Rising Voices of Narcolepsy, Project Sleep aims to combine the power of real-life stories with expert communication strategies to raise awareness and reduce stigmas for all those facing narcolepsy.