What Is Narcolepsy?

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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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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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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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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Launching Project Sleep’s New Website

by julie on August 22, 2014

PROJECT SLEEP NEW WEBSITE SLEEP HEALTH SLEEP DISORDERS AWARENESS CAMPAING EVENT SLEEP NON PROFIT ORGANIZATION

This week, we launched Project Sleep’s new website! We’ve created a bright site to match our vision for a brighter future. This will be our launching pad to showcase and expand our efforts.  A few fun pages to explore: “How I Am Curing My Sleep Disorder” Guest Post by Stacy Simera Host a NARCOLEPSY: NOT ALONE event! SLEEP WALK TAMPA […]

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huffpost healthy living narcolepsy julie flygare i'm not looking to be saved from narcolepsy author project sleep

Check out my provocative HuffPost article: “I’m Not Looking To Be Saved”! It’s a dream come true to write on HuffPost, adapting this post from my blog. I can’t wait to raise more awareness via this popular website. Please like and share. Also, check out “Tweeting My Way Through Narcolepsy” on HuffPost by the amazing […]

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narcolepsy retraction does not undermine the fundamental hypothesis of narcolepsy as autoimmune disorder dr thomas scammall dr mignot stanford

Recently, Science reported that Science Translational Medicine (STM), retracted an important study in their December 18, 2013 journal by Dr. Emmanuel Mignot of Stanford that explained the first steps in our understanding of narcolepsy as an autoimmune disorder. In his study, Dr. Mignot had found that T cells were primed to attack hypocretin. Hypocretin are the brain […]

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