Guest Post by Lisa “So I read this thing about how needing to nap is a lot like needing to fart…” When Julie Flygare shared this brilliant and hilarious comparison at the dinner table, an overwhelming urge hit me. It wasn’t a fart, nor was it sleep – it was cataplexy. My body slumped into…
To improve public understanding of narcolepsy, Project Sleep’s Rising Voices of Narcolepsy program trains people with narcolepsy to share their stories through public speaking and writing with local communities, healthcare providers, news outlets, blogs and beyond. Combining the power of real-life stories with expert communication strategies, our Rising Voices of Narcolepsy trained speakers and writers are effectively raising awareness and reducing stigma for all those facing narcolepsy.
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 often face stigma and isolation. Likewise, misconceptions and low awareness 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.
Rising Voices of Narcolepsy serves the dual purpose of fostering a new generation of narcolepsy patient-advocates spreading narcolepsy 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.
APPLICATIONS NOW BEING ACCEPTED! Project Sleep will host our third RVN training courses during the summer of 2019. Applicants may choose one of the following options:
- Eligibility: To be considered for the program, applicants must be age 18 or older and diagnosed with narcolepsy. We will evaluate 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. International participants are welcome, course is delivered in English.
- Time Commitment: The training takes about 3-4 hours per week over the month-long course. In addition, participants are expected to spend about 20 – 30 hours over the next year to fulfill the program’s core goals. SPOTS ARE LIMITED, so please be considerate of fellow applicants and apply only if you can fulfill this commitment.
- Cost: There is a $75 tuition fee to enroll in the program.
- Online Learning: These trainings are conducted online, NO travel is required. Participants submit weekly assignments via an online portal and there are optional video meetings to ask questions and foster connections between fellow RVN trainees and staff.
To learn more about Rising Voices of Narcolepsy, Project Sleep will host an informational webinar on Tuesday, March 5, 2019 at 8:00 – 9:00 p.m. ET. Interested individuals are encouraged to RSVP for the webinar here, even if you can’t join us live, signing up ensures you will receive the recording afterward.
Application deadline is April 15, 2019 at 12 midnight ET. Interested individuals should apply here.