YOUR STORY MATTERS: Introducing Rising Voices of Narcolepsy ℠

This month, Project Sleep announced Rising Voices of Narcolepsy ℠, a leadership training program to help people with narcolepsy effectively share their stories through public speaking and writing with local communities, healthcare providers, news outlets, blogs and beyond. On a personal note, this is a huge dream come true for me. It’s such a joy to use my seven years of experience…

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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…

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Watch Now: Today’s Tiny Triumph – A Video by Everyone Included & MedX

In this Everyone Included™ video, I speak with MedX innovators about what is means to track or measure our health. Are all things measurable? How do we make sure that intangible and invisible things like puppies, pain, happiness, sleepiness and social support, are part of the story too? How do we shift the culture of healthcare from “I…

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2015 Reflections & Dreams for 2016 – Homer Simpson, Koalas and Marathons, Oh My!

Scariest Moment of 2015: I gave 12 presentations in 2015, but by far the most intimidating was my 5-minute ignite talk at Stanford Medicine X. My legs trembled stepping on stage in front of this prestigious group of healthcare innovators. I’d prepared for months, but still totally blanked mid-speech, making for a dramatic pause…….. But I did it and I’m…

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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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What I Said: Julie Flygare’s MedX Ignite Talk Transcript

REM Runner’s Note: On Sept. 24, 2015, I had the huge honor of stepping on the MedX main stage at Stanford Medical School to give an ePatient Ignite Talk. This is (more-or-less) what I said:  ************ Diagnosed with narcolepsy at age 24, I was excited to tell my friends and family. Finally! I had legitimate medical terms…

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Narcolepsy 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…

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My 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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Working with Narcolepsy: Part III – When Caring Comes Naturally

After my boss and leadership got even more involved – the nap room situation improved quickly. (Read Part I and Part II of this story.) Nap Bench on the Move: The nap bench was moved again, this time to a small room on the second floor along a nice secluded quiet hallway. The door’s sign was changed to Wellness Room.…

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Raising Narcolepsy Awareness at Nova Southeastern University

Grand Rounds is the important educational tradition of doctors and healthcare professionals getting together to learn about evolving areas which may be outside of their core practice. However, patients are rarely invited to participate, so sharing my narcolepsy journey at Nova Southeastern University (NSU)’s Grand Rounds on May 8, 2015 was a HUGE honor. This is why, just 24 hours…

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