NARCOLEPSY: NOT ALONE

Say HELLO to Ben who shares a monumental message of hope and narcolepsy awareness from 5,800 feet in the air. Thanks to Ben, NARCOLEPSY: NOT ALONE is now inscribed on a scenic snow-topped mountaintop in the French Alps, along a popular chair-lift route for every single ski resort visitor to see until the next snow […]

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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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Tune in to the Doctors TV Show this Monday Feb. 9, I’ll be sharing my journey with narcolepsy – including sleepiness, cataplexy, sleep paralysis and hypnagogic hallucinations . See full information here. Watch TV interview online: Web exclusive extended version: Crafting an honest and accurate portrayal of narcolepsy with the Doctors TV Show was a lot of fun.  I […]

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This past year has been very tough for Daishia, age 11, who was recently diagnosed with narcolepsy with cataplexy. In addition to narcolepsy, she is also dealing with a seizure disorder, migraines and obstructive and central sleep apnea. “I wish I could take all her pain and struggles away and make things easier for her,” describes her […]

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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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Filming the Honda Narcolepsy PSA

by julie on October 24, 2014

Over the past few months, I’ve worked with Honda and a Honda agency, RPA, to create a narcolepsy public service announcement (PSA). I’m so proud and honored to have served as a real face and voice of narcolepsy for this project. In preparation, I shared my memoir, fact sheets, patient experience and key awareness points. It […]

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What does NARCOLEPSY: NOT ALONE mean to you?

by julie on August 27, 2014

What resonates with you? I created this word-collage using popular words from NARCOLEPSY: NOT ALONE campaign blog posts. For me, the words “connect”, “badass” and “tears” stand out. I love that positive and negative experiences are captured here. No matter where you are on your journey, your feelings are valid and normal, its all part of  the narcolepsy roller-coaster. […]

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Last week, I traveled to the Dominican Republic on vacation with my boyfriend. Knowing the Dominican Republic was not yet included in the NARCOLEPSY: NOT ALONE campaign, I was SO excited to personally add the 38th country to our amazing international photo series. In a rush to pack, I forgot my NARCOLEPSY: NOT ALONE paper […]

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Narcolepsy on The Doctors Show

by julie on May 21, 2014

On Thursday, May 22, 2014, narcolepsy will be featured on The Doctors Show. Please check for local listings here. As a narcolepsy spokesperson and author of Wide Awake and Dreaming: A Memoir of Narcolepsy, I’m so thrilled that the Doctors Show will highlight narcolepsy on TV. Thank you to my brave and beautiful friend and co-advocate, […]

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The NARCOLEPSY: NOT ALONE campaign is thrilled to unveil this beautiful new design by April-Scarlett Lee. Show your campaign pride while supporting a great cause. Order today: www.booster.com/NarcolepsyNotAlone Upon seeing April-Scarlett’s artistic contributions to the NARCOLEPSY: NOT ALONE campaign, I asked her if she would team up with me to create an official campaign design. She […]

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