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 took 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.
Project Sleep aims to host our third RVN trainings during the summer of 2019. Interested individuals would complete an application in spring 2019. Be sure to sign up for Project Sleep’s e-updates here.