News/Media

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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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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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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Tonight, I took on the ALS Ice Bucket Challenge. I was excited to participate in this viral awareness and fundraising campaign, as my Uncle Bill died of ALS and his courage inspires me every day as a narcolepsy advocate. I got the idea of taking the Ice Bucket Challenge in the scenic Griffith Park, during one […]

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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 Keynote Speaker in Australia!

by julie on August 11, 2014

Narcolepsy Support Australia Patient Conference 2015 Julie Flygare Keynote Speaker

Australia, here I come! I’m beyond honored and thrilled to announce that I will be a keynote speaker for the First Patient Conference hosted by Narcolepsy Support Australia on the Gold Coast in Queensland on May 1-3, 2015. Narcolepsy Expert Extraordinaire, Dr. Emmanuel Mignot is the other confirmed keynote speaker! In addition, I will present sessions on […]

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On Sept. 11, 2014, I will present a TED-style talk at “Disruptive Innovations” in Boston, MA.  My 12-minute speech will discuss: “How a Patient Helped Define a New Clinical Endpoint in Narcolepsy: Diagnosed with narcolepsy with cataplexy in 2007, award-winning author and founder of Project Sleep, Julie Flygare, shares her story on how she helped define a […]

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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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After my book-signing event in NYC, I shared my patient leader perspective at the Public Relations and Communications Summit in New Jersey on July 14, 2014. Our patient panel was led by Bob Brooks of WEGO Health and I was honored to share the stage with Michael Fernandez, an inspiring award-winning Migraine Health Activist and author of migrainediscussions.com. While […]

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