Presentation

A Message to the Narcolepsy Community in Italy!

by julie on November 14, 2016

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

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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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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Writing for me is time-traveling. On January 16, 2012, I sipped a steaming hot soy latte at my favorite coffee shop in Arlington, Virginia, cued up the classical piano in my headphones and closed my eyes. Here we go!  On this day, my time-traveling destination was a hotel room in Albany, New York – four years earlier. The subject […]

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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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What would you say if you only had 5 minutes to speak? This question haunted me all year. See, some girls dream about their wedding day. Others dream about speaking at MedX. Or maybe that’s just me, but the main stage of Stanford’s Medicine X has been a dream of mine – the holy grail of […]

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On Sept. 1 – 3, I had the extraordinary opportunity to speak at UCLA Medical school three nights in a row, sharing my inspiring narcolepsy journey with 120 first-year medical students and a dozen faculty members. The first-year students were just days into their medical education – energetic and eager to learn! I spoke as part of the students’ required […]

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Recently, I traveled to Atlanta to speak at the Hypersomnia Conference 2015. The conference featured a great variety of support groups and fantastic presentations by medical leaders, educational experts, patient advocates and a disabilities attorney. Uniquely, the conference also included hypersomnia, narcolepsy and KLS speakers and attendees, so we could share and learn from each […]

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After my boss and leadership got even more involved – the nap room situation improved quickly. (Read Part I and Part II of this story.) Nap Bench on the Move: The nap bench was moved again, this time to a small room on the second floor along a nice secluded quiet hallway. The door’s sign was changed to Wellness Room. […]

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