PATIENT ORGANIZATION HIGHLIGHTS

Project Sleep

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 its 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.”

Project Sleep educates and empowers individuals using events, campaigns, and programs to bring people together and talk about sleep as a pillar of health.

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 patientadvocates 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 Julie Flygare with narcolepsy and idiopathic hypersomnia while helping to foster awareness. Project Sleep educates

Additionally, Flygare hosts the Narcolepsy and empowers individuals Nerd Alert which using events, campaigns, is an educational video and toolkit and programs to bring people series that explores together and talk about sleep various aspects of the narcolepsy as a pillar of health. 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

Wake Up Narcolepsy

Founded in 2008, Wake Up Narcolepsy, Inc. (WUN) is a nonprofit, patient advocacy organization dedicated to driving narcolepsy awareness, education and research towards improved treatments and a cure. Executive Director, Claire Crisp, explains, “Narcolepsy remains an under-recognized, under-reported, and under-diagnosed condition that impacts every 24-hour period of a person’s life.”

Wake Up Narcolepsy works to provide funding for research, awareness, and support for individuals with narcolepsy through a plethora of programs. Claire Crisp Each year WUN participates in the prestigious Boston Marathon through the John Hancock Non-Profit Program to raise funds that are then directly donated to narcolepsy research. For 2021 their goal is to hit the one-million-dollar mark for funds donated to research since the organization’s inception. Crisp states, “While there are many therapeutic and research developments in Narcolepsy, securing a timely diagnosis remains a huge challenge in both adults and children.” Additionally, Crisp hosts the popular Narcolepsy 360 Podcast series (available on all major podcast platforms) which takes a panoramic view of narcolepsy from multiple perspectives, including patients, caregivers, researchers, and clinicians. WUN also holds multiple Narcolepsy Education Days each year (both in-person and digitally) for individuals with narcolepsy and their families. These events allow attendees to connect with other individuals with narcolepsy and to access the latest research and information in the field. Another valuable resource provided by WUN is the weekly online support groups for individuals with narcolepsy to connect with one another to share their successes and hardships with others who are in the same shoes.

Finally, WUN partners with the Center for Courageous Kids to host family retreats for children with narcolepsy and their families. Oftentimes, before attending camp, children with narcolepsy have never met other children with the same diagnosis. One remarkable thing regarding all these programs and supports is that they are free for individuals to access.

Crisp ends by adding, “This is an exciting time for people with narcolepsy due to the emerging advancements in different therapies and recognition of the challenges around mental health that people with narcolepsy experience. It is imperative that the psychosocial educational and economic impact of the disorder is recognized inside the doctor’s office with a view to addressing the complexities of the condition.”

To learn more visit wakeupnarcolepsy.org