Narcolepsy Blog

the daily edition on channel 7

Tomorrow, I will be interviewed on live TV in Australia, sharing my story of narcolepsy on The Daily Edition. Aussie friends, be sure to tune in – it airs on Tuesday, Nov. 25, 2014 at 2:00 pm on Channel 7. The narcolepsy segment is scheduled to air around 2:30 pm. I’m excited to visit The Daily Edition’s […]

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huffpost live

The psychological side of coping with narcolepsy is sometimes as challenging as the physical. I was thrilled to join HuffPost Live for an important discussion, “How To Manage The Psychological Side Of Illness” on Friday, Nov. 21, 2014. Watch below or here: Host Nancy Redd welcomed an inspiring panel of health advocates including yours truly, Juile Flygare (@REMRunner) Founder […]

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Celebrating 5 Years of Narcolepsy Advocacy

by julie on November 17, 2014

julie flygare narcolepsy spokesperson rem runner blog narcolepsy commercial narcoleptic blog

This week marks five years as a narcolepsy advocate. When I published my first REM Runner blog post, I “came out” publicly after two years of hush-hush. I didn’t know where this would lead me, but every fiber in me ached to speak up and make change. Once I began,  I watched myself devote time and energy I didn’t know I had. The momentum […]

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Watch Now: How a Patient Helped Define A New Clinical Endpoint with FDA

How did I catch the “Advocacy Bug”? Why is the patient voice important? Watch my TED-style talk on the power of narcolepsy advocates working directly with FDA to build a brighter future. I gave this speech to over 300 clinical trial development experts in the pharmaceutical industry at the Disruptive Innovations Conference in Boston, MA on Sept. […]

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NARCOLEPSY NOT ALONE PROJECT SLEEP NEW WEBSITE 10

I’m so excited to share Project Sleep’s new NARCOLEPSY: NOT ALONE™ campaign website at: www.narcolepsynotalone.com. When I started this campaign last year, I never imagined it would become such an empowering international movement. Now, NARCOLEPSY: NOT ALONE™ is the world’s largest social media narcolepsy awareness campaign - setting a bold new precedent that narcolepsy is not a joke, but a real disorder […]

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Filming the Honda Narcolepsy PSA

by julie on October 24, 2014

narcolepsy spokesperson julie flygare youre not alone with narcolepsy project sleep honda rpa narcolepsy psa narcolepsy commercial narcolepsy advertisement sleepiness cataplexy filming 8

Over the past few months, I’ve worked with Honda and a Honda agency, RPA, to create a narcolepsy public service announcement (PSA). I’m so proud and honored to have served as a real face and voice of narcolepsy for this project. In preparation, I shared my memoir, fact sheets, patient experience and key awareness points. It […]

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Viral Narcolepsy with Cataplexy Video

by julie on October 22, 2014

narcolepsy cataplexy

A video of a young woman with narcolepsy and cataplexy has gone viral. Watch below or on YouTube. This is a powerful video and I am grateful to Sarah Elizabeth for bravely sharing her experience! Sarah Elizabeth is primarily experiencing a narcolepsy symptom called cataplexy here. Cataplexy is a sudden loss of muscle tone, resulting in […]

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Finding Beauty In Narcolepsy

by julie on October 9, 2014

Dear Diagnosis Blogathon 1

Do you know what drives me? What REALLY drives me as an advocate, writer and speaker? Beauty. I am obsessed with finding beautiful ways to convey narcolepsy. Why? Because I find it hard, and I LOVE the intellectual and artistic challenge. This is not a choice but a compulsion. I agonize over word choices. I scour the […]

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Watch: Disruptive Innovations Interview on Narcolepsy, FDA & Project Sleep

I’m thrilled to share my Disruptive Innovations interview with the Conference Forum’s Exec. Director, Valerie Bowling. This fun discussion on narcolepsy, FDA and Project Sleep was filmed before my speech at the TCF’s Disruptive Innovations Conference in Boston, MA on Sept. 11, 2014. Thank you so much to Valerie and the Conference Forum’s team for […]

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narcolepsy noise dreams hallucinations sleep paralysis

Dear Hypnagogic Hallucination Version of My Boyfriend, SHHH!! I’M SLEEPING!! Seriously, dude. You come home while I’m napping and wake me up from my precious naptime. I have narcolepsy and I NEED my sleep. But no, YOU are home and apparently, you could care less. I’d tell you to BE QUIET but, hmm, I’m paralyzed. You stomp […]

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