Project Sleep

Programs: Sleep-2 pcori aims to engage patients, scientists and other stakeholders as partners across the entire span of sleep research, from topic generation to conduct of studies to disseminating and implementing research findings.

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.

project sleeps jack & julie narcolepsy scholarship is the first-ever national scholarship program supporting students with narcolepsy while also raising narcolepsy awareness in high school and college settings. In its first year, the program awarded two scholarships. In 2015, the program awarded nine scholarships. In 2016, the program awarded 14 scholarships. This year, the program awarded 11 scholarships. In total - the program has awarded 36 scholarships in its first four years. Each scholarship of $1,000 is awarded to high school seniors attending college. Narcolepsy is a neurological disorder affecting 1 in 2,000 people worldwide. Symptoms include excessive sleepiness, cataplexy (sudden muscle weakness triggered by emotions), sleep paralysis and frightening hallucinations while falling asleep or waking up.