Narcolepsy Research

Last month, I had the honor of giving two presentations to allied health care professionals including physicians, nurse practitioners, respiratory therapists, social work experts, and sleep technologists at the Sweet Dreams & Nightmares Sleep Symposium presented by Tallahassee Memorial Healthcare and the Florida Medical Association. With the west coast to east coast time change, the […]

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Over the winter holidays, I was thrilled to visit Taiwan and meet with a leading Taiwanese narcolepsy researcher and clinician, Dr. Yu-Shu Huang. I was in Taiwan for an amazing ten-day vacation with my brother, sister-in-law and niece. After a long sleepless journey to Taiwan, I was so glad that we arrived in Taipei at their nighttime, so […]

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Guest Contributors: Emily Barker, Ph.D. and Katherine Sharkey, M.D., Ph.D. New research published in the journal Sleep Medicine suggests that lactating women who take Xyrem (sodium oxybate) to treat narcolepsy with cataplexy can time their breastfeeding to avoid exposing nursing infants to elevated levels of the drug in milk (Barker et al., 2017). Data from […]

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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 have a confession. I realized recently, “OMG, I haven’t told my Members of Congress that I have narcolepsy!!” While I consider myself a vocal advocate, I haven’t informed my legislators that I CARE about narcolepsy and sleep research and they should too. So, I’m excited to share that I will be going to Capitol Hill […]

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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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CNN Article on My Marathon with Narcolepsy

by julie on April 27, 2017

I’m thrilled to share CNN Health’s feature article Runner: Having narcolepsy is harder than a marathon. This Sleep Awareness Week, please share with your friends and family to raise critical narcolepsy awareness. Working with CNN on this piece was particularly meaningful. I first spoke with the reporter, Maria, in January two months before the race after she’d read […]

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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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I’m so excited to give my narcolepsy presentation this Saturday, March 25, 2017, at Hoag Neurosciences Institute’s Sleep Symposium in Irvine, CA. The event is FREE and open to the public, register here to save your spot! The event kicks of at 9:00 a.m. in the Hoag Hospital Irvine Auditorium. I speak from 10:45 – 11:30 a.m. and I’ll be […]

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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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