NARCOLEPSY: NOT ALONE

Recently, ‘Captain America: Civil War’ star Jeremy Renner said that he wanted to be “Captain Narcolepsy… so he could nap whenever he wanted” on Live! with Kelly and Michael. Afterward, many people with narcolepsy and their supporters took to social media to respond. One particular response caught my attention – written by Wendy Ellsworth, a 34-year-old registered nurse living […]

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Recently, ‘Captain America: Civil War’ star, Jeremy Renner appeared on Live! with Kelly & Michael, stating, “I want to be Captain… Narcolepsy… I just want to nap whenever I want to nap.” Kelly adds, “My husband already beat you to it. We call it mark-olepsy.” [Everyone laughs…] Watch here (comment is at 6:45): My opinion: In reaction, I […]

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I recently created my first Flipagram, highlighting the NARCOLEPSY: NOT ALONE campaign! I hope you enjoy and please share with friends and family. Watch here: Thanks for watching my first Flipagram! NARCOLEPSY: NOT ALONE has over 1,200 photos of people with narcolepsy and supporters from all 50 U.S. States and 48 countries around the world. Of course, this campaign is not […]

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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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This National Sleep Awareness Week, I had the honor of traveling to Ireland to be the keynote speaker at Ireland’s 4th Annual Suddenly Sleepy Saturday Narcolepsy Event on March 12, 2016.  This experience, and my entire trip to Ireland, was totally unforgettable and surreal. After the long journey from Los Angeles to Ireland, I arrive in […]

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NARCOLEPSY: NOT ALONE in Vegas, baby!

by julie on November 8, 2015

 “We dance for laughter, we dance for tears, we dance for madness, we dance for fears, we dance for hopes, we dance for screams, we are the dancers, we create the dreams.” Last night, we truly celebrated NARCOLEPSY: NOT ALONE with big smiles and pride in Las Vegas! Accompanied by award-winning neurologist and Ph.D. narcolepsy specialist […]

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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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REM Runner’s Note: On Sept. 24, 2015, I had the huge honor of stepping on the MedX main stage at Stanford Medical School to give an ePatient Ignite Talk. This is (more-or-less) what I said:  ************ Diagnosed with narcolepsy at age 24, I was excited to tell my friends and family. Finally! I had legitimate medical terms […]

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REM Runner’s note: Recently, Elaine of Chica Siesta joined the NARCOLEPSY: NOT ALONE campaign. After reading her beautiful blog, I asked her to share in a guest post here. Please enjoy Elaine’s powerful and fresh voice. Read more at chicasiesta.wordpress.com.  Syncopation – by Elaine Golden Recently, my friends and I went swing dancing at a jazz club […]

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When the Simpsons premieres tonight at 8pm ET/PT,  Homer will get “narcolepsy”. I’m thrilled to report that Executive Producer, Al Jean tweeted me: “The episode was modified somewhat after I read the extremely compelling article you wrote. Not sure you will be 100% happy…” Thank you, Al Jean and the Simpsons  for thoughtfully reading and modifying […]

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