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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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Speaking at Current Concepts in Sleep Conference

by julie on September 10, 2014

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Over Labor Day weekend, I traveled to Tampa Bay, Florida to speak at the Current Concepts in Sleep Conference. Seeing tears in people’s eyes, I knew I’d opened their hearts to the REAL narcolepsy. It was an honor to present my journey to sleep doctors and technicians. Throughout the conference, Project Sleep was well-represented! Sleep […]

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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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narcoelpsy not alone julie flygare narcoleptic blog narcolepsy awareness campaign giveaway prize winners

Thank you to everyone who submitted new NARCOLEPSY: NOT ALONE photos during the First Birthday Giveaway Contest! I finally just drew the winners: Rayanne in the UK Kellie in Florida Suzy in Australia Congratulations! I will mail your prize-packs this week with over $60 worth of narcolepsy awareness gear including: 2 new infographic posters (one for you and […]

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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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Supporting a Friend With Narcolepsy

by julie on August 8, 2014

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If your friend or loved one was diagnosed with narcolepsy, you may wonder the best way show support. You want to help your friend through this difficult time, but it can be hard to know what to say or do. While there are no set rules for supporting a friend with narcolepsy, I hope these […]

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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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