narcolepsy video

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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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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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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Speaking at Patients as Partners Conference

by julie on March 26, 2015

On Monday, March 16, 2015, I was honored to speak at Patients as Partners, a conference dedicated to finding solutions on how to truly partner with patients in clinical trials. Representatives from pharma, PCORI, CTTI, FasterCures, FDA, patient advocates and patients all came together in Philadelphia for this important discussion. Many role-models and friends were in […]

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Tune in to the Doctors TV Show this Monday Feb. 9, I’ll be sharing my journey with narcolepsy – including sleepiness, cataplexy, sleep paralysis and hypnagogic hallucinations . See full information here. Watch TV interview online: Web exclusive extended version: Crafting an honest and accurate portrayal of narcolepsy with the Doctors TV Show was a lot of fun.  I […]

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Friends, please vote for the REM Runner blog in the Best Health Blogs Contest. It takes 2 seconds to vote via FB or Twitter, once per day. Click here to vote! Why vote? For five years, the REM Runner blog has offered hope, inspiration and awareness tools for the narcolepsy community. People with narcolepsy often feel lost and alone, until […]

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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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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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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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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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