Narcolepsy: Not Alone

As a 29-year-old, female journalist and photographer, I am accustomed to the words people use to define me; “Fearless”, “gutsy”, “courageous” are just a few. But, as a woman living with severe narcolepsy, I often struggle to reconcile these one-dimensional characterizations with my own sense of self. That disconnect was recently underscored when I announced […]

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julie flygare narcolepsy hyersomnia conference 2015

Recently, I traveled to Atlanta to speak at the Hypersomnia Conference 2015. The conference featured a great variety of support groups and fantastic presentations by medical leaders, educational experts, patient advocates and a disabilities attorney. Uniquely, the conference also included hypersomnia, narcolepsy and KLS speakers and attendees, so we could share and learn from each […]

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person with narcolepsy julie flygare epatient wide awake and dreaming

After my boss and leadership got even more involved – the nap room situation improved quickly. (Read Part I and Part II of this story.) Nap Bench on the Move: The nap bench was moved again, this time to a small room on the second floor along a nice secluded quiet hallway. The door’s sign was changed to Wellness Room. […]

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julie flygare nap room narcolepsy

In December 2014, our office moved from Downtown Los Angeles to Irwindale, CA. My commute went from 7 miles to 25 miles. At the same time, our office environment went from private offices to cubicles. To be fair – I was well informed about this before I signed up for the job. (Read Part I […]

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VIA awards City of Hope Julie Flygare Stewardship

On Friday, I was so surprised to be awarded a Values In Action (VIA) award for “Excellence” at work! As I approached the stage, the presenter read the comments from my nomination: Julie is always excited to take on any new task. She approaches her work with enthusiasm, regardless of how big or small the assignment is. […]

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Recently, I received a video from a mother of a young boy with narcolepsy. Warning: I cannot watch this video without crying. Brooke describes: “My 11-year-old son, Owen, was diagnosed with narcolepsy last spring. It was and is scary, and there just isn’t a lot of information out there, especially positive information! So you have […]

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While crossing the finish line of the San Diego Rock n Roll Marathon was an awesome moment, my biggest prize came yesterday when Project Sleep gave out TEN scholarships to students with narcolepsy through the Jack & Julie Narcolepsy Scholarship program. Meet the 2015 Jack & Julie Narcolepsy Scholarship Recipients: View Scholarship Awards Announcement View/Download […]

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Over the weekend, the Executive Producer of The Simpsons, Al Jean, corresponded briefly regarding the Homer Simpson narcolepsy news via Twitter. First, he tweeted “.@thesimpsons Extremely interesting article about the true dangers of narcolepsy” to share the NY Post article on my experience with narcolepsy (re-published from Women’s Health Magazine). View the tweet here and retweet! I responded, […]

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homer simpson narcolepsy

It seems that Hollywood has a surprisingly large percentage of cases of narcolepsy, a disorder affecting 1 in 2,000 people, about 200,000 Americans and 3 million people worldwide, including many children and young adults. The latest Hollywood victim is Homer Simpson. Word on the street is he going to discover he has narcolepsy in the […]

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YOU CAN AND YOU WILL (Marathon Part II)

by julie on June 12, 2015

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As I crossed the start line of the San Diego Rock n Roll Marathon, runners started passing me. I laughed when a pack of Elvis(s) passed me. Typical. “Slow and steady. No one to beat. Nothing to prove,” I told myself. My shirt was drenched with sweat within 3 miles. Soon my hands raisined and […]

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