Memoir
Representing Narcolepsy at the White House
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…
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 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 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…
Read MoreHappy Rare Disease Day 2016!
Today, February 29 is Rare Disease Day! With 350 million people around the world living with a rare disease, HUG someone with a RARE DISEASE today. For Rare Disease Day 2016, I was SO honored to contribute to two great articles for Mashable’s Social Good program. Author, Katie Dupere eloquently describes: “For those living with rare…
Read More99 cents SALE – E-book of Wide Awake and Dreaming: A Memoir of Narcolepsy – LIMITED TIME
For one week, download Kindle version of Wide Awake and Dreaming: A Memoir of Narcolepsy for just $0.99. To inspire more readers this holiday season, I’ve discounted my e-book from $8.99 to $0.99. Please share or gift this to friends and family members. Together, we are building a brighter future for narcolepsy, and I’m so grateful for your support! Purchase…
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 MoreNarcolepsy Presentations at UCLA Med School 2015 – “A learning experience for both medical students and seasoned physicians.”
On Sept. 1 – 3, I had the extraordinary opportunity to speak at UCLA Medical school three nights in a row, sharing my inspiring narcolepsy journey with 120 first-year medical students and a dozen faculty members. The first-year students were just days into their medical education – energetic and eager to learn! I spoke as part of the students’ required…
Read MoreMy First Standing Ovation – Speaking at the Hypersomnia Conference 2015
Recently, I traveled to Atlanta to speak at the Hypersomnia Conference 2015. The conference featured a great variety of support groups and fantastic presentations by medical leaders, educational experts, patient advocates and a disabilities attorney. Uniquely, the conference also included hypersomnia, narcolepsy and KLS speakers and attendees, so we could share and learn from each…
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