Finding Beauty In Narcolepsy

by julie on October 9, 2014

Dear Diagnosis Blogathon 1

Do you know what drives me? What REALLY drives me as an advocate, writer and speaker? Beauty. I am obsessed with finding beautiful ways to convey narcolepsy. Why? Because I find it hard, and I LOVE the intellectual and artistic challenge. This is not a choice but a compulsion. I agonize over word choices. I scour the […]

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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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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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