Narcolepsy Diagnosis

Why I am Running a Marathon

by julie on April 15, 2015

After Running 16 miles on Sunday

Recently, I was featured as a Boston College “Soaring Eagle”   – for writing my memoir and founding Project Sleep. This was a huge honor, but also very ironic. While at BC Law, I felt like a total failure. Diagnosed with narcolepsy at the beginning of my second year, I scolded myself for falling behind and never securing […]

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Speaking at Patients as Partners Conference

by julie on March 26, 2015

julie flygare speaker project sleep founder narcolepsy patient advocate reduced

On Monday, March 16, 2015, I was honored to speak at Patients as Partners, a conference dedicated to finding solutions on how to truly partner with patients in clinical trials. Representatives from pharma, PCORI, CTTI, FasterCures, FDA, patient advocates and patients all came together in Philadelphia for this important discussion. Many role-models and friends were in […]

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sally photobooth cataplexy narcolepsy blog

Four lovely ladies walk into a photo booth, one has narcolepsy with cataplexy, her name is Sally. Something is funny and as Sally laughs, the camera perfectly captures the stages of her cataplexy attack. Sally (top-middle) describes: This was a photo booth at a friend’s wedding that takes a photo every 5 seconds. The three other ladies […]

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narcolepsy the doctors show julie flygare narcolepsy not alone narcoleptic spokesperson wide awake and dreaming memoir 2

Tune in to the Doctors TV Show this Monday Feb. 9, I’ll be sharing my journey with narcolepsy – including sleepiness, cataplexy, sleep paralysis and hypnagogic hallucinations . See full information here. Watch TV interview online: Web exclusive extended version: Crafting an honest and accurate portrayal of narcolepsy with the Doctors TV Show was a lot of fun.  I […]

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Grace Nepal

Please welcome GRACE to the NARCOLEPSY: NOT ALONE campaign, who took this photo at the Everest Base Camp in Nepal. In her inspiring blog post, she describes her journey as a woman with narcolepsy with cataplexy to reach the Everest Base Camp: “On paper you might think that a person with a diagnosis of Narcolepsy attempting to trek to […]

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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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narcolepsy american journal of medicine

The patient’s voice is rarely included in medical journals, but luckily, I love breaking down superficial barriers between patients and medical professionals. Check out: “Narcolepsy: Let the Patient’s Voice Awaken Us”, by Julie Flygare, JD and Sairam Parthasarathy, MD, (American Journal of Medicine, January 2015). I feel so lucky to have collaborated with Dr. Parthasarathy on this project, he’s a doctor […]

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Heather Dudeck

My name is Heather Dudeck, PWN Supporter of my husband Mitch and registered Dental Hygienist in Indiana. I’ve been in the dental field for nearly seven years; three as a dental hygienist and the first four as a dental assistant. I was asked quite a few questions about oral health at the Denver Narcolepsy Network […]

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