What does cataplexy look like? GIF by Eleanor of www.Falling-Asleep.com

Check out this amazing depiction of terrifying symptom of ‪#‎narcolepsy‬ called CATAPLEXY – created by Eleanor of Falling Asleep: A Narcolepsy Guidebook. Please note: this character is fully conscious and awake yet crumbling to the ground paralyzed. It’s terrifying.   For more infographics, blogs and resources: www.falling-asleep.com Commentary by Julie Flygare: I was 22 when my knees fight buckled while…

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Ever Met Someone with Narcolepsy? Or Feeling ALONE with Narcolepsy?

I recently created my first Flipagram, highlighting the NARCOLEPSY: NOT ALONE campaign! I hope you enjoy and please share with friends and family. Watch here: Thanks for watching my first Flipagram! NARCOLEPSY: NOT ALONE has over 1,200 photos of people with narcolepsy and supporters from all 50 U.S. States and 48 countries around the world. Of course, this campaign is not…

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NARCOLEPSY: NOT ALONE takes over the French Alps!

Say HELLO to Ben who shares a monumental message of hope and narcolepsy awareness from 5,800 feet in the air. Thanks to Ben, NARCOLEPSY: NOT ALONE is now inscribed on a scenic snow-topped mountaintop in the French Alps, along a popular chair-lift route for every single ski resort visitor to see until the next snow…

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Visiting Ireland to Speak at Ireland’s Narcolepsy Awareness Day 2016

This National Sleep Awareness Week, I had the honor of traveling to Ireland to be the keynote speaker at Ireland’s 4th Annual Suddenly Sleepy Saturday Narcolepsy Event on March 12, 2016.  This experience, and my entire trip to Ireland, was totally unforgettable and surreal. After the long journey from Los Angeles to Ireland, I arrive in…

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A proud moment – publishing a chapter in narcolepsy clinical guide

A few nights ago, I returned home from work exhausted and found a mysterious heavy package on my doorstep. Inside was a brand new copy of Narcolepsy: A Clinical Guide (2nd ed.), edited by Dr. Meeta Goswami, Dr. Michael Thorpy and S.R. Pandi-Perumal. As a patient advocate, it was a HUGE honor to contribute the chapter…

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Nap Shame. I’ve got it. Do you?

In this short audio clip, I explore my feelings of shame and embarrassment around taking a nap at work. (Also available here) Do you have nap shame or are you an empowered napper? I want to hear your thoughts!

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What I Said: Julie Flygare’s MedX Ignite Talk Transcript

REM Runner’s Note: On Sept. 24, 2015, I had the huge honor of stepping on the MedX main stage at Stanford Medical School to give an ePatient Ignite Talk. This is (more-or-less) what I said:  ************ Diagnosed with narcolepsy at age 24, I was excited to tell my friends and family. Finally! I had legitimate medical terms…

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Working with Narcolepsy Part II: Hunting for a Nap Room

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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Meet Owen, 11 Year Old Boy Living with Narcolepsy

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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Project Sleep Awards 10 Scholarships to Students with Narcolepsy Entering College

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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