Blog

Re-Discovering Halloween with Narcolepsy

by julie on December 5, 2016

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Nine Halloweens ago, I felt like a “monster” – lacking the energy and health to play the role of the fun fabulous party host I wanted to be. At the time, I was a few weeks into my narcolepsy diagnosis and struggling terribly to adjust. Check out chapter 11 of my memoir, Wide Awake and Dreaming: […]

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This fall, I was BUSY spreading narcolepsy awareness to doctors, medical students and researchers across the country. Upon returning from Italy, I started back at my full-time job in pancreatic cancer advocacy first thing the next morning. The following evening, I traveled to UCLA Medical School to give my narcolepsy presentation for first-year medical students […]

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A Message to the Narcolepsy Community in Italy!

by julie on November 14, 2016

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REMRunner’s Note: This post is in Italian for the amazing friends I met during my recent trip to Bologna. To read about my trip in English, check out part I and part II.  Ciao amici, Grazie per avermi accolto nel vostro paese. E’ stato così meraviglioso incontrarvi e passare la giornata con voi al 20° anniversario dell’AIN (Associazione […]

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Raising Narcolepsy Awareness in Italy!

by julie on November 13, 2016

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On Saturday Sept. 24, 2016, I stood outside the fancy lecture hall at the University of Bologna in Italy, fidgeting with nerves. I picked up my headset for the “live translation” system that would be my lifeline for the day. Traveling to Italy to speak at the 20th Anniversary of AIN (Associazione Italiana Narcolettici e […]

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I felt a scratch in my throat at Stanford’s Medicine X conference.  Flying to Italy, pressure spread across my forehead. Waking early the next morning in Bologna, a breeze swirled in through my open hotel window. I smiled and then I coughed… And coughed… And coughed. It was official. I was sick. In Italy.   How could […]

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The Magic of MedX 2016

by julie on October 20, 2016

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On my birthday, I traveled to San Francisco to participate in my favorite conference, Stanford Medicine X 2016! On Thursday, Sept 15, I participated in two interesting workshops and then the full conference took place Friday Sept 16 – Sunday Sept 18. Although this was only my second year attending MedX, it felt like a […]

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Narcolepsy Advocate in Neurology Now Magazine

by julie on October 12, 2016

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Hot off the presses! I’m proud to be featured in Neurology Now’s article, Self Diagnose Successfully, on becoming an empowered and informed patient. I love Neurology Now magazine but narcolepsy isn’t included much, so I am thrilled to help raise some narcolepsy awareness with this neurology audience. Also, it’s super cool that my MedX friend, Matthew Might is […]

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Health Further Conference 2016 Flygare Narcolepsy 6

Wow, the last month has been one of the busiest of my life, but all great stuff (as I try to remind myself when I feel overwhelmed). Now, it’s time to catch you up on what’s been happening! Once I heard about the possibility of speaking at Health:Further on August 24 to over 1,000 healthcare professionals in Nashville, […]

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Patient Advocates at Conferences Survey

by julie on September 16, 2016

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I’m SO honored that New York Times writer and editor, Phyllis Korkki features my story in her new book The Big Thing: How to Complete Your Creative Project Even If You’re a Lazy, Self-Doubting Procrastinator Like Me, published by Harper on August 9, 2016. Never in a million years did I imagine that Wide Awake and Dreaming would be featured […]

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