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. 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 psycho-social 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