Narcolepsy Awareness

Narcolepsy ePatient Medicine X Julie Flygare Video

I’m thrilled to share my 5-minute Ignite! Talk from Stanford Medicine X 2015. Please share with friends and family to raise narcolepsy awareness (https://youtu.be/MXTd8xd_f8s). In this video, I describe my journey with narcolepsy from people laughing in my face to living proudly and creating the NARCOLEPSY: NOT ALONE campaign. I emphasize how feeling “misunderstood and alone” with […]

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narcolepsy video viral sarah wheaton narcoleptic news media tv narcolepsy awareness

Narcolepsy awareness is on FIRE this fall! This is thanks to the narcolepsy PSA series airing on national TV, The Daily Edition segment in Australia and Sarah Wheaton’s video of cataplexy (a symptom of narcolepsy) going viral on Reddit. As a narcolepsy spokesperson and author, it’s great to see narcolepsy gain international media attention. I hope we can continue promoting truthful […]

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narcolepsy tv live the daily edition julie flygare narcolepsy advocate awareness spokesperson author wide awake and dreaming

Some are calling it the best news segment on narcolepsy yet! On Nov. 25, 2014, I was thrilled to be featured on The Daily Edition’s “Truth about Narcolepsy” segment airing on Channel 7 in Australia.  Monique Wright interviewed myself and Dr. David Cunnington in Melbourne. Watch now: Visiting Channel 7’s Los Angeles studio was a lot of […]

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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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What does NARCOLEPSY: NOT ALONE mean to you?

by julie on August 27, 2014

Narcolepsy- Not Alone

What resonates with you? I created this word-collage using popular words from NARCOLEPSY: NOT ALONE campaign blog posts. For me, the words “connect”, “badass” and “tears” stand out. I love that positive and negative experiences are captured here. No matter where you are on your journey, your feelings are valid and normal, its all part of  the narcolepsy roller-coaster. […]

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