Founded in 2013, Project Sleep is a nonprofit organization that aims to bridge the gap between sleep health and sleep disorders while bringing a patient-driven focus to the sleep space. Julie Flygare, President and CEO of Project Sleep, states that “while these are both urgent public health issues, they must be addressed simultaneously,” adding, “if 1 in 5 have a chronic sleep condition, then it should never be left out of conversations about sleep health.” To this end, Project Sleep educates and empowers individuals using events, campaigns, and programs to bring people together and talk about sleep as a pillar of health.
Diagnosed at the age of 24 with narcolepsy, Flygare expresses “one of the most striking things for me was the social experience of having Narcolepsy and that people thought it was a joke.” She also notes that there was a “general lack of awareness about sleep and that people were not taking sleep seriously.”
Project Sleep has numerous initiatives in place to help support their mission. Flygare shares “the Sleep Advocacy Initiative is probably one of the highlights.” Beginning in 2017, Project Sleep partnered with the Sleep Research Society to go to Capitol Hill to talk about the importance of sleep research. Flygare expresses, “We are proud of the progress we have made in advancing a greater focus on sleep disorders research at NIH and we continue to push for that…even though the sleep research portfolio has been going up over the last decade, the individual funding for sleep disorders was not keeping on par.”
Through the advocacy initiative, Project Sleep also works towards advancing healthcare and treatment access as well as education and awareness for sleep. Project Sleep’s Rising Voices of Narcolepsy program works to train people with narcolepsy to effectively share their stories through public speaking and writing. In essence, it is creating the next generation of patient-advocates and preparing them to take an active role in spreading awareness.
Another initiative of Project Sleep is the Jack & Julie Scholarship. This is a national scholarship program that supports students with narcolepsy and idiopathic hypersomnia while helping to fostering awareness.
Additionally, Flygare hosts the Narcolepsy Nerd Alert which is an educational video and toolkit series that explores various aspects of the narcolepsy experience. Finally, Project Sleep led the creation of World Narcolepsy Day (annually on September 22nd) to bring the community together and generate awareness on a global scale. Twenty-Seven organizations, internationally, co-lead this initiative and plan various events worldwide on this special day.
Flygare explains that the ultimate goal of Project Sleep is to “make sleep cool.”
To learn more visit project-sleep.com
