Project Sleep

Sleep advocacy program - a year-round national and grass-roots advocacy program dedicated to educating patient advocates, medical professionals, researchers and policy-makers about critical Sleep related policy issues. Serving as the centerpiece of our year-round advocacy efforts, the Sleep advocacy program in october 2020 brought together a powerful group of key Sleep related community leaders to discuss timely challenges and opportunities and provide a conduit for information sharing so community stakeholders can raise issues with the broader community.

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.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 ones 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.

Narcolepsy awareness program (nap) - the narcolepsy awareness program aims to increase awareness to key audiences who are currently lacking knowledge and understanding of narcolepsy. At the same time, we will reduce both self-stigma and societal stigma by providing people with narcolepsy with the leadership, role modeling, and vital opportunities and resources to feel hope, inspriation, connection and empowerment to succeed with narcolepsy. Nap program tactics include media efforts, speaking engagements, evergreen narcolepsy resources, fresh news content, and a narcolepsy awareness campaign.