Sleep Disorder

“We are witnessing a revolution of our understanding of narcolepsy.” – Dr. Emmanuel Mignot, M.D. Ph.D., Director of the Center for Sleep Sciences and Medicine, Stanford University 2018 was an exciting year for narcolepsy research and drug development. Here’s my top six research highlights of 2018 that you should know about! 1. Narcolepsy & the […]

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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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Viral Narcolepsy with Cataplexy Video

by julie on October 22, 2014

A video of a young woman with narcolepsy and cataplexy has gone viral. Watch below or on YouTube. This is a powerful video and I am grateful to Sarah Elizabeth for bravely sharing her experience! Sarah Elizabeth is primarily experiencing a narcolepsy symptom called cataplexy here. Cataplexy is a sudden loss of muscle tone, resulting in […]

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Over 40 people gathered to raise awareness about sleep health and sleep disorders in sunny Jacksonville, FL on March 8, 2014! Sleep Walkers and canine friends in tow, gathered at Bull Park in Atlantic Beach, FL. They registered and collected event t-shirts, wristbands, buttons and festive goodies. Attendees shared their amazing sleep spirit posters. As the local organizer and “Sleep Fairy” for […]

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In honor of National Sleep Awareness Week, join me for the 3rd Annual National Sleep Walk in Washington DC! Celebrating sleep health & sleep disorder awareness When: Sunday March 3, 2013 at 10:00 a.m.
Where: Lincoln Memorial Reflecting Pool Steps,
 National Mall, Washington DC (view google map)
Who: Free for all who register online. (First 100 registrants receive t-shirt!)
What to bring: Walking shoes & […]

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I’m so thrilled to launch my narcolepsy awareness video series. I’ve dreamed of this project for many moons. It’s surreal to see it through. Watch my introductory video here or on YouTube.   Thank you so much for checking out my video!  I will be adding exciting new content regularly, so check back soon.  Many thanks […]

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I’m thrilled to share my guest blog post, “Notes on Narcolepsy: Part 3 – From the Patient’s Perspective,” on Psychology Today’s “The Land of Nod” Blog by Dr. Shelby Harris. Dr. Harris is a friend, a clinical psychologist and the Director of the Behavioral Sleep Medicine Program at Montefiore Medical Center. For this post, she asked me to […]

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[Photo: Julie with Dominique Friend, Sickle Cell Disease Advocate] This Wednesday, I had the honor of speaking on the Patient Advocate Panel at the “InnovationPharm Event” hosted by Siren Interactive, in conjunction with the 7th Annual Rare Disease and Orphan Drug Leadership Congress in Philadelphia, PA. The round-table discussion over dinner focused on how pharmaceutical companies can […]

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Heartbeats: Finding Mine Again

by julie on July 17, 2012

“Where there are no words… know the silences are carrying the thoughts and prayers of all who love you.” -Dawn Dais  “What is this?” I wondered, placing my hands on my collar bone to get as close as possible to the problem. I sat in my parked car and looked out into the rain. Six […]

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Before I Die…

by julie on July 16, 2012

“Before I die…” caught me off-guard on Saturday. I was driving down 14th street NW in DC, when I slammed on the brakes and pulled over. I didn’t know what to expect, but the beautiful messages of hope and love made my day! I took photos but  didn’t contribute to the wall. I mulled it over […]

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