Narcolepsy Diagnosis

narcolepsy advocate Julie Flygare project sleep narcoleptic diagnosis narcolepsy treatment

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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Speaking in Italy!

by julie on June 26, 2016

julie flygare dr emmanuel mignto italian narcolepsy organization speaking engagement meeting

This September 23-24, I will travel to Italy to speak at a very special 20th anniversary party of A.I.N. (Associazione Italiana Narcolettici e Ipersonni) in Bologna. Other featured speakers will include Dr. Emmanuel Mignot from Stanford (USA) and Prof. Jean-Charles Schwartz from Paris (France). While there will be live translation, I’m hoping to brush up […]

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On June 2, 2016, I had the honor of attending the White House/Stanford Medicine X workshop, “Engaging Participants as Partners in Research”, as part of President Obama’s Precision Medicine Initiative. This event far exceeded my wildest expectations. But first, some context. It’s Gonna Be a Good Day: The day before going to the White House, on […]

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This week, I received a very special invitation from the WHITE HOUSE! I am so honored to share that on June 2, 2016, I will join the Medicine X and EveryoneIncluded™ family of rockstar advocates and innovators at the White House for an important discussion on patients as equal partners in research, a core goal of President Obama’s […]

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wendy ellsworth narcolepsy superhero captain narcolepsy jeremy renner NARCOLEPSY NOT ALONE 3

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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Watch Now: Today’s Tiny Triumph – A Video by Everyone Included & MedX

In this Everyone Included™ video, I speak with MedX innovators about what is means to track or measure our health. Are all things measurable? How do we make sure that intangible and invisible things like puppies, pain, happiness, sleepiness and social support, are part of the story too? How do we shift the culture of healthcare from “I […]

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julie flygare narcolepsy stanford medicine x everyone included

Recently, I was honored to join a group of rockstar advocates and innovators for a fantastic discussion and experimental filming exercise! Check out this awesome first video highlighting narcolepsy, sleepiness and invisible illnesses: When you get invited to an “experimental filming dinner party” in the Hollywood Hills where there’s no cellphone service, you may feel a little uncertain… […]

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Foot-Massage

During lunchtime today, I went to my nap room at work, cuddled up into my lovely blanket from Ireland and quickly fell asleep. Next thing, I awoke to the most AMAZING foot massage!! Oh la la. My feet were sore from intense yoga classes over the weekend, so I really appreciated the free yummy foot massage from…. um…. my phantom foot […]

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Check out this amazing depiction of terrifying symptom of ‪#‎narcolepsy‬ called CATAPLEXY – created by Eleanor of Falling Asleep: A Narcolepsy Guidebook. Please note: this character is fully conscious and awake yet crumbling to the ground paralyzed. It’s terrifying.   For more infographics, blogs and resources: www.falling-asleep.com Commentary by Julie Flygare: I was 22 when my knees fight buckled while […]

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