Rare Disease

Friends! I’m super excited to share that on Tuesday, Sept. 4, at 7 p.m. ET, Project Sleep will host a very special “Ask Us Anything” Facebook Live event, featuring myself along with Emmanuel Mignot, M.D. Ph.D., Director of the Stanford Center for Sleep Sciences and Medicine, and Watson, a chihuahua with narcolepsy. We will answer as many of your […]

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Friends, I’m so honored to be a speaker on an upcoming webinar, “Translating the Patient Story into Action” taking place on Wednesday, August 22nd at 2:00 p.m. ET.  Please register today to save your spot! This event is hosted by the Society for Participatory Medicine, one of my very favorite organizations ever. The Society for Participatory Medicine […]

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“There are two ways we can increase the public’s understanding of narcolepsy — we can push information out or we can pull them in with our stories.” -Rising Voices of Narcolepsy Workbook People ask me: “How do I get started sharing my story?” Project Sleep’s Rising Voices of Narcolepsy program is my answer, it is leadership […]

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Hi friends! I’m so excited to share an amazing opportunity to support critical narcolepsy research THIS WEEK! My Representative, Congressman Schiff of California, is preparing to send a letter to NIH inquiring on the current size, scope, and direction of the narcolepsy portfolio (See Letters). This letter will encourage NIH to support the full spectrum of narcolepsy […]

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I’m so excited to share my Health:Further keynote presentation video. I delivered this speech to over 1,000 healthcare professionals in Nashville, TN last year. My speeches are rarely online – so be sure to check this out!  Watch video: I shared here how mad nervous I was for this speech, but I managed to pull it off! […]

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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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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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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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