Narcolepsy

rising-voices-colour

This month, Project Sleep announced Rising Voices of Narcolepsy ℠, a leadership training program to help people with narcolepsy effectively share their stories through public speaking and writing with local communities, healthcare providers, news outlets, blogs and beyond. On a personal note, this is a huge dream come true for me. It’s such a joy to use my seven years of experience […]

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I’m thrilled to share CBS News Los Angeles’ awesome segment on my experience with narcolepsy. Please WATCH & SHARE (http://cbsloc.al/291UTw6): On Monday June 27, this segment aired during the 5 o’clock evening news, highlighting my sleepiness, cataplexy, and the challenges napping as an adult.  The news piece also mentioned my non-profit, Project Sleep, my book “Wide Awake and Dreaming: A Memoir of Narcolepsy” […]

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On June 2, 2016, I had the honor of attending the White House/Stanford Medicine X workshop, “Engaging Participants as Partners in Research”, as part of President Obama’s Precision Medicine Initiative. This event far exceeded my wildest expectations. But first, some context. It’s Gonna Be a Good Day: The day before going to the White House, on […]

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During lunchtime today, I went to my nap room at work, cuddled up into my lovely blanket from Ireland and quickly fell asleep. Next thing, I awoke to the most AMAZING foot massage!! Oh la la. My feet were sore from intense yoga classes over the weekend, so I really appreciated the free yummy foot massage from…. um…. my phantom foot […]

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Check out this amazing depiction of terrifying symptom of ‪#‎narcolepsy‬ called CATAPLEXY – created by Eleanor of Falling Asleep: A Narcolepsy Guidebook. Please note: this character is fully conscious and awake yet crumbling to the ground paralyzed. It’s terrifying.   For more infographics, blogs and resources: www.falling-asleep.com Commentary by Julie Flygare: I was 22 when my knees fight buckled while […]

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Say HELLO to Ben who shares a monumental message of hope and narcolepsy awareness from 5,800 feet in the air. Thanks to Ben, NARCOLEPSY: NOT ALONE is now inscribed on a scenic snow-topped mountaintop in the French Alps, along a popular chair-lift route for every single ski resort visitor to see until the next snow […]

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Nap Shame. I’ve got it. Do you?

by julie on February 13, 2016

In this short audio clip, I explore my feelings of shame and embarrassment around taking a nap at work. (Also available here) Do you have nap shame or are you an empowered napper? I want to hear your thoughts!

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Scariest Moment of 2015: I gave 12 presentations in 2015, but by far the most intimidating was my 5-minute ignite talk at Stanford Medicine X. My legs trembled stepping on stage in front of this prestigious group of healthcare innovators. I’d prepared for months, but still totally blanked mid-speech, making for a dramatic pause…….. But I did it and I’m […]

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I’m thrilled to share my 5-minute Ignite! Talk from Stanford Medicine X 2015. Please share with friends and family to raise narcolepsy awareness (https://youtu.be/MXTd8xd_f8s). In this video, I describe my journey with narcolepsy from people laughing in my face to living proudly and creating the NARCOLEPSY: NOT ALONE campaign. I emphasize how feeling “misunderstood and alone” with […]

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REM Runner’s Note: On Sept. 24, 2015, I had the huge honor of stepping on the MedX main stage at Stanford Medical School to give an ePatient Ignite Talk. This is (more-or-less) what I said:  ************ Diagnosed with narcolepsy at age 24, I was excited to tell my friends and family. Finally! I had legitimate medical terms […]

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