narcolepsy video
Narcolepsy in the News: CBS News Los Angeles
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”…
Read MoreReal-Life Narcolepsy Superhero Reveals Powers to Captain America’s Jeremy Renner
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…
Read MoreCaptain America’s Jeremy Renner wants Narcolepsy as his Superpower?
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…
Read MoreWatch Now: New Video on Narcolepsy, Sleepiness & Invisible Illnesses
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……
Read MoreMy best hallucination yet! A Visit from the Phantom Foot Massager
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…
Read MoreWhat does cataplexy look like? GIF by Eleanor of www.Falling-Asleep.com
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…
Read MoreWATCH NOW: MedX 2015 Ignite! Talk by Narcolepsy Advocate, Julie Flygare
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…
Read MoreMeet Owen, 11 Year Old Boy Living with Narcolepsy
Recently, I received a video from a mother of a young boy with narcolepsy. Warning: I cannot watch this video without crying. Brooke describes: “My 11-year-old son, Owen, was diagnosed with narcolepsy last spring. It was and is scary, and there just isn’t a lot of information out there, especially positive information! So you have…
Read MoreSpeaking at Patients as Partners Conference
On Monday, March 16, 2015, I was honored to speak at Patients as Partners, a conference dedicated to finding solutions on how to truly partner with patients in clinical trials. Representatives from pharma, PCORI, CTTI, FasterCures, FDA, patient advocates and patients all came together in Philadelphia for this important discussion. Many role-models and friends were in…
Read MoreThe Doctors Show Features My Story with Narcolepsy
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: Crafting an honest and accurate portrayal of narcolepsy with the Doctors TV Show was a lot of fun. I was blown away…
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