Medication

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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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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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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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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Happy Rare Disease Day 2016!

by julie on February 29, 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 […]

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Don’t miss this highly captivating post Becoming a Doctor with Narcolepsy, now published on Project Sleep’s website. The author is a third year medical student diagnosed with narcolepsy a year and a half ago, after suffering symptoms since age 15. In this moving reflection, the medical student contemplates a tough decision: whether or not to disclose her diagnosis […]

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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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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 […]

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