Watch: Disruptive Innovations Interview on Narcolepsy, FDA & Project Sleep

I’m thrilled to share my Disruptive Innovations interview with the Conference Forum’s Exec. Director, Valerie Bowling. This fun discussion on narcolepsy, FDA and Project Sleep was filmed before my speech at the TCF’s Disruptive Innovations Conference in Boston, MA on Sept. 11, 2014. Thank you so much to Valerie and the Conference Forum’s team for…

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Bringing the Patient Voice to Disruptive Innovations Conference

This week, I flew to Boston to speak at the Disruptive Innovations conference. My 15-minute TED-style talk was titled “How a Patient Helped to Define a New Clinical Endpoint in Narcolepsy”. Over the past few months, I researched and drafted my presentation and delivered two practice versions for my Toastmasters club. Knowing I was the “patient presenter”…

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What Does It Feel Like to Speak to an Audience of 1,000 People?

Wow, the last month has been one of the busiest of my life, but all great stuff (as I try to remind myself when I feel overwhelmed). Now, it’s time to catch you up on what’s been happening! Once I heard about the possibility of speaking at Health:Further on August 24 to over 1,000 healthcare professionals in Nashville,…

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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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Celebrating 5 Years of Narcolepsy Advocacy

This week marks five years as a narcolepsy advocate. When I published my first REM Runner blog post, I “came out” publicly after two years of hush-hush. I didn’t know where this would lead me, but every fiber in me ached to speak up and make change. Once I began,  I watched myself devote time and energy I didn’t know I had. The momentum…

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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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Preparing TED-style Talk for “Radical Thinkers”

On Sept. 11, 2014, I will present a TED-style talk at “Disruptive Innovations” in Boston, MA.  My 12-minute speech will discuss: “How a Patient Helped Define a New Clinical Endpoint in Narcolepsy: Diagnosed with narcolepsy with cataplexy in 2007, award-winning author and founder of Project Sleep, Julie Flygare, shares her story on how she helped define a…

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Patient Advocacy at Public Relations & Communications Summit 2014

After my book-signing event in NYC, I shared my patient leader perspective at the Public Relations and Communications Summit in New Jersey on July 14, 2014. Our patient panel was led by Bob Brooks of WEGO Health and I was honored to share the stage with Michael Fernandez, an inspiring award-winning Migraine Health Activist and author of migrainediscussions.com. While…

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Narcolepsy Presentation at Current Concepts in Sleep Conference 2014

I’m honored to be a featured speaker at the upcoming Current Concepts in Sleep Conference in St. Pete Beach, FL on August 29-30, 2014. I will be sharing my inspirational narcolepsy presentation – from collapsing to the ground to becoming a vocal advocate. The Current Concepts in Sleep Conference will take place at the picturesque TradeWinds Resort. The agenda features…

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