Narcolepsy Boldly | Julie Flygare
November 10, 2014
I’m Julie Flygare, the founder of Project Sleep, a narcolepsy spokesperson, published author, blogger and runner. At age 24, when I was diagnosed with narcolepsy and cataplexy at the beginning of my second year of law school, I thought my future was shattered.
I’d heard of narcolepsy but thought it was a joke. Unlike comedic portrayals in movies, I suffered from the real symptoms including excessive sleepiness, muscle tone loss with emotions (cataplexy), and terrifying hallucinations and paralysis around sleep. Balancing symptoms, treatments and life-style changes was a nightmare.
Inspired by my personal challenges, I focused my legal education on health law and rare disease drug development policy. Graduating from Boston College Law School in 2009, I moved to Washington DC to write a memoir and advocate for narcolepsy. I hoped to open people’s hearts and minds to the real condition.
Upon recognizing that many doctors were unfamiliar with narcolepsy, I collaborated with Harvard Medical School researchers in 2009 to establish a 5-hour educational program based on my story now taught to all Harvard Medical School students. In 2010, I started my “REM Runner” blog about running and living with narcolepsy.
Once I started speaking out, I couldn’t stop. I caught the “advocacy bug”, the best chronic condition in the world. Public speaking became an unexpected passion – I’ve shared my inspiring journey with doctors, medical students, government officials and anyone else who will listen.
In December 2012, I published “Wide Awake and Dreaming: A Memoir of Narcolepsy,” which won First Place in the 2013 San Francisco Book Festival Award for Biography/Autobiography. My story has also been featured by Marie Claire, ABC News, NBC, Huffington Post and Discovery Channel.
In 2012 – 2013, I led efforts to successfully secure narcolepsy’s place in FDA’s Patient Focused Drug Development Initiative. I also created the first-ever narcolepsy advocacy mobile app, awareness video series and infographic.
In 2014, I founded Project Sleep, a new non-profit organization to awaken America to sleep health and sleep disorders. Some of my proudest recent efforts include working with Honda to create a narcolepsy PSA, co-founding the Jack & Julie Narcolepsy Scholarship and creating the NARCOLEPSY: NOT ALONE international awareness campaign.
I live in Los Angeles, CA, work full-time, and serve on NIH’s Sleep Disorder Research Advisory Board. In my spare time, I run up mountains and oversee Project Sleep, my dream job.
In this series, I will empower patients and families facing narcolepsy and rare disease with tips on communicating about narcolepsy, building a support system, raising your voice and finding the right narcolepsy doctor.
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