News/Media

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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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. Watch below. I’m excited to visit The […]

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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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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 PSA Project Sleep Founder Julie Flygare

I’m thrilled to share the narcolepsy public service announcement (PSA) created in collaboration with Honda. It was a huge honor to serve as a real voice and face of narcolepsy in this 30-second PSA, to air on TV in the next month. View here: Project Sleep’s Press Release: Bad Narcolepsy Joke Turns Honda into Awareness […]

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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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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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IMG_0224

This week, I flew to Boston to speak at the Disruptive Innovations conference. My 15-minute TED-style talk was titled “How a Patient Helped to Define a New Clinical Endpoint in Narcolepsy”. Over the past few months, I researched and drafted my presentation and delivered two practice versions for my Toastmasters club. Knowing I was the “patient presenter” […]

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