narcolepsy blog

I’m thrilled to share Project Sleep’s new narcolepsy awareness video series. These videos feature five of our Rising Voices of Narcolepsy speakers sharing their personal stories, interwoven with key narcolepsy facts. I hope you will be as moved as I am by these brave stories and share them today: WATCH NOW SHARE ON FACEBOOK TWEET IT   Why […]

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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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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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How did I catch the “Advocacy Bug”? Why is the patient voice important? Watch my TED-style talk on the power of narcolepsy advocates working directly with FDA to build a brighter future. I gave this speech to over 300 clinical trial development experts in the pharmaceutical industry at the Disruptive Innovations Conference in Boston, MA on Sept. […]

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I’m so excited to share Project Sleep’s new NARCOLEPSY: NOT ALONE™ campaign website at: www.narcolepsynotalone.com. When I started this campaign last year, I never imagined it would become such an empowering international movement. Now, NARCOLEPSY: NOT ALONE™ is the world’s largest social media narcolepsy awareness campaign – setting a bold new precedent that narcolepsy is not a joke, but a real disorder […]

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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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REM Runner’s Note: Diana is the mother of Danielle Brooks – an amazing, artistic and athletic young woman with narcolepsy who created www.succeedingwithnarcolepsy.com. In this guest post, Diana offers insightful tips for navigating the school accommodations process and helping your student with narcolepsy succeed.  Diana’s Guest Post: 1. You must be an advocate for your child. No […]

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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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For the third year in a row, I’m inviting all Halloween enthusiasts to design sleep-themed pumpkins for REM Runner’s Virtual Pumpkin Patch!  1. Create your own SLEEP/DREAM-themed PUMPKIN. Be creative – Is your pumpkin having a dream or nightmare? Snoring? Cat-napping? Anything sleep or dream related goes. 2. Send me a photo of your pumpkin […]

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At age five, Makenna was a healthy bright child in Kindergarten, with a great sense of humor and a charming magnetic personality. Under the Weather:In February 2011, Makenna came down with pneumonia. She was very sick and admitted to the Children’s Hospital for IV Antibiotics. She recovered from the infection, but never got her strength […]

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