narcolepsy memoir
Speaking in Italy!
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…
Read MoreA Monumental Day: Visiting the White House as a Narcolepsy Advocate
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…
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 MoreEver Met Someone with Narcolepsy? Or Feeling ALONE with Narcolepsy?
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…
Read MoreNARCOLEPSY: NOT ALONE takes over the French Alps!
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…
Read MoreVisiting Ireland to Speak at Ireland’s Narcolepsy Awareness Day 2016
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…
Read MoreA proud moment – publishing a chapter in narcolepsy clinical guide
A few nights ago, I returned home from work exhausted and found a mysterious heavy package on my doorstep. Inside was a brand new copy of Narcolepsy: A Clinical Guide (2nd ed.), edited by Dr. Meeta Goswami, Dr. Michael Thorpy and S.R. Pandi-Perumal. As a patient advocate, it was a HUGE honor to contribute the chapter…
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