Narcolepsy Blog

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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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

support friend with narcolepsy support child with narcolepsy narcoleptic julie flygare help my friend with narcolepsy support system loved one with narcolepsy how can i help 2

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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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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IMG_8616

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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Join Us! Sleep Walk Tampa Bay

by julie on August 1, 2014

Screen shot 2014-06-27 at 9.24.13 AM

In one month, on Sunday August 31, 2014, we will be walking on the beach to celebrate sleep in St. Pete Beach, FL! Please join myself and local host, Jessica starting at 9:00 a.m. for a 1.5 mile scenic beach walk and sleep spirit contest. Order event t-shirts by August 12, 2014. Join Project Sleep to celebrate […]

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