We’ve reached across the community of people working to make the future brighter for people living with narcolepsy and other serious conditions. Here we honor partners in the Unite Narcolepsy initiative.
Wake Up Narcolepsy, Inc., is a 501(c)(3) not-for-profit organization dedicated to supporting narcolepsy awareness and research to find a cure. WUN carries out its mission by providing funding to accelerate a cure for narcolepsy; increasing awareness of narcolepsy; decreasing the time lapse from symptom onset to proper diagnosis; and providing supportive resources for people with narcolepsy and their families. Since its inception in 2008, WUN has granted more than $225,000 to cutting-edge narcolepsy research at Stanford University, Harvard University/Beth Israel Deaconess Medical Center, Vanderbilt University, and SickKids Hospital, Toronto. WUN hosts annual awareness and fundraising events including a Boston Marathon Running Team, Wake Up Nashville! A Songwriting Contest, Annual Golf Outing, Wake Up Narcolepsy ~ Boston! An Evening of Comic Relief, and supports individual initiatives throughout the country. WUN also has launched their a Narcolepsy Goes to School Program to educate teachers and school nurses about narcolepsy. WUN has been featured on The Ricki Lake Show, Fox News, WSMV and the Hank Stolz Show. Wake Up Narcolepsy recognizes the importance of the FDA’s invitation and the opportunity it represents to shape the future of narcolepsy treatment. In response, the organization led formation of of Unite Narcolepsy initiative to reach out broadly and help prepare the community to make the most of this pivotal opportunity. Link: https://www.wakeupnarcolepsy.org/
Julie Flygare, JD, is a leading narcolepsy spokesperson, published author, and blogger diagnosed with narcolepsy with cataplexy in 2007. She received her B.A. from Brown University in 2005 and her J.D. from Boston College Law School in 2009. In 2012, Julie published “Wide Awake and Dreaming: A Memoir of Narcolepsy,” which won First Prize in the San Francisco Book Festival Bio/Autobiography Award 2013. Julie has spoken about narcolepsy to scientific researchers, doctors, nurses, college and medical school students, NIH, FDA and CDC representatives. Her story has been featured by Marie Claire, ABC, NBC, Psychology Today and Discovery Channel. She is the creator of the NATIONAL SLEEP WALK and the NARCOLEPSY: NOT ALONE international awareness campaign. Julie currently serves on NIH’s Sleep Disorder Research Advisory Board and lives in Los Angeles, CA. Link: http://www.julieflygare.com
More to come as we spread the word!