To improve public understanding of narcolepsy, Project Sleep is thrilled to launch Rising Voices of Narcolepsy, a leadership training program to help people with narcolepsy effectively share their stories through public speaking and writing with local communities, healthcare providers, news outlets, blogs and beyond. The first set of Rising Voices of Narcolepsy training sessions took place during the summer of 2017 and the second set will take place during the summer of 2018.
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.
Rising Voices of Narcolepsy 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.
This year’s training sessions will take place during the summer of 2018. To be considered for the program, applicants must be age 18 or older and diagnosed with narcolepsy. There will be a $35 tuition fee for participants. We will evaluate qualified applicants based on enthusiasm and capability. We aim to have a diverse set of participants presenting a wide range of demographics and backgrounds.
Applicants may choose one of the following options:
- Speaking Session: a one-month online course focused on sharing your story via public speaking that will run from June 15th to July 15th 2018. This training will take about 3-4 hours each week on your own schedule to complete (a total of 12-16 hours). Outcome: Course graduates will be prepared to deliver an educational and uplifting 15-20 minute presentation sharing their experience with narcolepsy, interwoven with key facts and figures.
- Writing Session: a one-month online course focused on sharing your story via writing that will run from July 15th to August 15th 2018. This training will take about 3-4 hours each week on your own schedule to complete (a total of 12-16 hours). Outcome: Course graduates will have a publishable and timely essay (500 – 800 words) sharing their experience with narcolepsy, interwoven with key facts and figures.
In addition to the time commitments listed above, participants are expected to contribute about 20 – 30 hours over the next year to successfully complete the program’s goals and exercises. Please carefully consider this time commitment before submitting an application.
The application deadline is April 15th, 2018 at 5:00pm PT and we will inform applicants of our decision in May 2018.