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.
Request a Speaker or Writer
Request a Rising Voices of Narcolepsy trainee to speak at your event or write for your publication by filling out this form.
“I knew I wanted to raise awareness and had already tried giving a few speeches on my own. I found it difficult to book any engagements and I was having difficulty narrowing my story down to give an effective presentation. The Rising Voices of Narcolepsy program provided exactly the framework I needed, now I can tell that my audiences are intrigued and fascinated by my speech. RVN also gave me a platform, I can say I’ve completed this leadership training program with Project Sleep, which adds to my credibility as a speaker and advocate and makes it easy to book events.”
– Shannon Burkoth, RVN Speaking Graduate 2017 and Program Mentor
“I was hesitant to apply for the RVN program because I knew speaking in front of people would be a challenge, but I also knew it would help get me out of my comfort zone and that I wanted to be a voice for others like myself to spread awareness. After giving four presentations, all of this is so surreal! I am confident about my presentation and I strongly feel that I am sharing an important message.”
The Rising Voices of Narcolepsy program was co-created and led by Project Sleep President & CEO, Julie Flygare and health communication specialist Rebecca Fuoco. Project Sleep is extremely grateful to Jazz Pharmaceuticals and Avadel Pharmaceuticals for grant funding to help support the 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.