Rare Disease

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On Saturday, March 25, I was honored to give my narcolepsy presentation at Hoag Health’s Sleep Symposium in Irvine, CA. Because I work full-time with a long commute, I got home fairly late on Friday night and started counting backward from when I was supposed to be in Irvine on Saturday at 9:00 a.m. The […]

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Alanna lifting weights in Sydney, Australia and Julie  running in Los Angeles, USA

One of the best parts of the Griffith Park Trial Marathon took place about 10 days BEFORE the race. Arriving home from work one night around 8:00 p.m., I was totally drained and wanted to call it a night, but I had to go running. Ugh. I’d run over 270 miles in four months, and only had […]

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Photo by Howie Stern

On Saturday, March 4, 2017, I took on the Griffith Park Trail Marathon as a person with narcolepsy to raise funds for Project Sleep’s Jack & Julie Narcolepsy Scholarship. As I said here, I was nervous and uncertain. On the morning of the race, I woke up lethargic and stiff, but I showed up. I had […]

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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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I received the following comment on my recent blog post and wanted to respond here. ************ Dear N. Leptic, Thank you for taking an interest in learning more about my experience with narcolepsy. First of all, I am so sorry to hear about your challenging experience with narcolepsy. It sounds like you are facing some very real and significant […]

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This Monday, August 8, my presentation, “I Have Narcolepsy. Do You?” will air to tens of thousands of online viewers as part of the Sleep Success Summit. Register for free today. The Sleep Success Summit is a free online event (August 8-15), featuring over 30 experts discussing a wide range of sleep health and sleep disorder topics. With tens of thousands of viewers expected […]

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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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narcolepsy advocate Julie Flygare project sleep narcoleptic diagnosis narcolepsy treatment

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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This week, I received a very special invitation from the WHITE HOUSE! I am so honored to share that on June 2, 2016, I will join the Medicine X and EveryoneIncluded™ family of rockstar advocates and innovators at the White House for an important discussion on patients as equal partners in research, a core goal of President Obama’s […]

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wendy ellsworth narcolepsy superhero captain narcolepsy jeremy renner NARCOLEPSY NOT ALONE 3

Recently, ‘Captain America: Civil War’ star Jeremy Renner said that he wanted to be “Captain Narcolepsy… so he could nap whenever he wanted” on Live! with Kelly and Michael. Afterward, many people with narcolepsy and their supporters took to social media to respond. One particular response caught my attention – written by Wendy Ellsworth, a 34-year-old registered nurse living […]

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