Am I a TYPICAL person with narcolepsy?

“Am I a TYPICAL person with narcolepsy?” No, I’m not. Here’s why: The majority of people living with narcolepsy are undiagnosed. Up to 75% of “us” are currently either undiagnosed or misdiagnosed with other conditions. So the most TYPICAL person with narcolepsy is walking around unaware of the true nature of their symptoms, questioning their…

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WATCH 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…

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Guest on HuffPost Live: The Psychological Side of Illness

The psychological side of coping with narcolepsy is sometimes as challenging as the physical. I was thrilled to join HuffPost Live for an important discussion, “How To Manage The Psychological Side Of Illness” on Friday, Nov. 21, 2014. Watch below or here: Host Nancy Redd welcomed an inspiring panel of health advocates including yours truly, Juile Flygare (@REMRunner) Founder…

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Watch Now: How a Patient Helped Define A New Clinical Endpoint with FDA

How did I catch the “Advocacy Bug”? Why is the patient voice important? Watch my TED-style talk on the power of narcolepsy advocates working directly with FDA to build a brighter future. I gave this speech to over 300 clinical trial development experts in the pharmaceutical industry at the Disruptive Innovations Conference in Boston, MA on Sept.…

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Representing People with Narcolepsy at the FDA

Yesterday, I had the extraordinary honor of visiting the Food and Drug Administration (FDA) to urge them to include Narcolepsy in the ground-breaking Patient-Focused Drug Development initiative.  I was #19 to sign up on the disease nomination speaker list, even though I arrived 15 minutes before registration technically opened. The large conference room quickly filled…

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