Rare Disease

Running a Marathon for Narcolepsy Scholarship

by julie on February 8, 2015

marathon narcolepsy scholarship julie flygare fundraising

It’s official! I’m training to run the San Diego Rock n’ Roll Marathon on May 31, 2015 to support the Jack & Julie Narcolepsy Scholarship. Please consider supporting in one of two ways: Purchase a NARCOLEPSY: NOT ALONE t-shirt or sweatshirt here. Deadline: Feb. 15. Delivered in time to wear for National Narcolepsy Day/Suddenly Sleepy Saturday March 7, […]

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A Day In The Life… NPR Features Narcolepsy

by julie on February 7, 2015

a day in the life of narcoleptic julie flygare narcolepsy the pulse whyy npr radio

I’m thrilled that NPR station WHYY featured my story of narcolepsy on the radio today. Listen online here: “A Day In The Life of a Narcoleptic” by Steven Jackson. When the reporter for NPR asked to follow me around for 24 hours, I said “YES!” right away. I’m always looking to raise awareness about narcolepsy.  I am […]

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Daishia West Virginia

This past year has been very tough for Daishia, age 11, who was recently diagnosed with narcolepsy with cataplexy. In addition to narcolepsy, she is also dealing with a seizure disorder, migraines and obstructive and central sleep apnea. “I wish I could take all her pain and struggles away and make things easier for her,” describes her […]

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A Wicked Awesome Moment

by julie on January 23, 2015

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London 2007 F*CK, I slept through Wicked. In February 2007, I was in London for spring break and splurged on an overpriced “half-price” ticket to see my favorite musical, Wicked. I’d listened to the soundtrack a hundred times, but never seen it. The first act was magical, but as the curtains raised for the second […]

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narcolepsy scholarship students college high school seniors education narcolespy awareness

I’m thrilled to share that Project Sleep unveiled the Jack & Julie Narcolepsy Scholarship 2015 to support students with narcolepsy while also fostering awareness of this often misunderstood disorder in high school and collegiate settings. This spring, three high school seniors will be awarded $1,000 toward their college education. Please read FULL application for details. Last year, […]

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Putting the RUNNER back in REM Runner!

by julie on December 30, 2014

rem runner julie flygare narcolepsy scholarship runner san diego marathon

Tonight, I was glowing after my very first training to prepare for the San Diego Rock n Roll Marathon on May 31, 2015 to raise funds for the Jack & Julie Narcolepsy Scholarship! I was going to wait to make a big announcement but I had to share this now. I’ve been feeling overweight, dark […]

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Speaking at the Hypersomnia Conference 2015

by julie on December 16, 2014

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I’m thrilled to be a featured speaker at the Hypersomnia Foundation’s Annual Conference on Fri. July 17 – Sat. July 18, 2015 at Emory Conference Center Hotel in Atlanta, GA. Join us: http://bit.ly/2015HSFConference. I will present two sessions, one sharing my inspiring journey from hiding my narcolepsy to becoming a vocal advocate and a second session on communicating about sleepiness. […]

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narcolepsy tv live the daily edition julie flygare narcolepsy advocate awareness spokesperson author wide awake and dreaming

Some are calling it the best news segment on narcolepsy yet! On Nov. 25, 2014, I was thrilled to be featured on The Daily Edition’s “Truth about Narcolepsy” segment airing on Channel 7 in Australia.  Monique Wright interviewed myself and Dr. David Cunnington in Melbourne. Watch now: Visiting Channel 7’s Los Angeles studio was a lot of […]

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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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