What Is Narcolepsy?

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I’m so honored to be featured by Women You Should Know in today’s fantastic feature article “You Should Know Someone With Narcolepsy… Her Name Is Julie Flygare”.  The article states: “When Women You Should Know first came to know of Julie, she was described as, ‘a dynamo Rock Star, who accomplishes everything she does with grace, humility, courage, and strength, [...]

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narcolepsy 504 plan for student narcolepsy high school tips parents diana brooks

REM Runner’s Note: Diana is the mother of Danielle Brooks – an amazing, artistic and athletic young woman with narcolepsy who created www.succeedingwithnarcolepsy.com. In this guest post, Diana offers insightful tips for navigating the school accommodations process and helping your student with narcolepsy succeed.  Diana’s Guest Post: 1. You must be an advocate for your child. No [...]

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NARCOLEPSY: NOT ALONE Hits 1,000!

by julie on March 21, 2014

Narcolepsy Not Alone bright lights

Today, the NARCOLEPSY: NOT ALONE campaign surpassed 1,000 photos. This stunning photo series highlights the SUPERSTARS of narcolepsy and their supporters in all 50 U.S. States and 37 countries around the world, proving narcolepsy is REAL and we are NOT ALONE! This campaign is changing lives. “Clayton didn’t want anyone knowing he had narcolepsy,” described his mother, Bethany. [...]

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 Thank you to everyone who tuned in today for my international narcolepsy broadcast! If you missed it, watch on YouTube or below: Friends all over the US and around the world in Canada, Europe and Australia watched live! Thank you for your incredible support. Happy Suddenly Sleepy Saturday!

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Why Advocate for Narcolepsy?

by julie on March 8, 2014

why advocate for narcolepsy julie flygare narcolepsy patient spokesperson project sleep infographic project sleep national sleep awareness week

Happy Suddenly Sleepy Saturday! I created this infographic to explain why it’s so important we raise up our voices about narcolepsy: 75% of people with narcolepsy are undiagnosed and untreated Only 50% of adults believe narcolepsy can significantly impact overall health, despite serious nature of the disorder Only 70% of adults have heard of narcolepsy – the [...]

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ten things you didn't know about narcolepsy julie flygare narcolespy patient spokesperson

In honor of National Sleep Awareness Week, the top 10 things you didn’t know about narcolepsy:  10. It’s not like the moviesRat Race, Deuce Bigalow: Male Gigolo and Moulin Rouge feature comical characters with narcolepsy. Falling asleep mid-sentence may happen in real-life, but it’s not the typical everyday experience. Narcolepsy is more than sleepiness, involving other serious [...]

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narcolepsy event julie flygare narcolepsy spokesperson suddenly sleepy saturday march 8 2014 national sleep awareness week

Join me for a FREE international live broadcast, “Celebrating Narcolepsy Awareness” on Suddenly Sleepy Saturday, March 8, 2014 at 4:00 p.m. (EST). This presentation offers vivid description of the narcolepsy journey from mysterious symptoms to diagnosis and treatment. Highlights my inspiring transformation from hiding narcolepsy to living proud and out loud as a spokesperson. Register below [...]

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I’m so thrilled to share Harvard Medical School’s new Narcolepsy Website – a fantastic user-friendly resource for patients and supporters alike. There are videos, PDFs and basic information about narcolepsy symptoms, diagnosis and treatment along with suggestions for living well with narcolepsy – including tips for daily life, school, work and safety.  I had the [...]

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julie flygare narcolepsy

Last Friday, Jan. 31, I shared my inspirational narcolepsy story at UCLA Medical School. In one hour, we laughed, cried and changed perceptions about narcolepsy in future doctors. The medical students had recently studied narcolepsy in their curriculum – briefly learning the symptoms and watching a few YouTube videos. I was honored to add my patient [...]

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cataplexy triggers narcolepsy blog julie flygare 4

Cataplexy is a fascinating symptom of narcolepsy – a sudden loss of muscle tone, without loss of consciousness, often triggered by emotions. I experience minor cataplexy daily – knees buckling, jaw slackening, eyes fluttering or hands trembling. With medication, my full-body attacks are once every couple weeks. It’s not always strong or positive emotions that cause my [...]

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