Last month, I gave one of my favorite presentations at the 10th Biennial Pediatric Sleep Medicine Conference hosted by my alma mater, Brown University. My “TED-style talk” had two key messages: Prescribing social support to people with narcolepsy, Partnering with patients, patient leaders and organizations to develop patient-centered research toward recognizing and addressing stigma. I’d spent […]
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Ten years ago today, I came out as a person with narcolepsy. On November 10, 2009, I started this REM Runner blog, disclosing on the internet for the first time that: “Hi! I’m Julie Flygare, a person living with narcolepsy with cataplexy.” From my original About Me: “Narcolepsy has changed my life for better and […]
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“I remember keeping [my narcolepsy] private and always feeling like it was this thing sitting at the back of my throat that I wanted to share, but just stopping myself, remembering ‘you’ll get a bad reaction, this person won’t understand.'” – Julie Flygare, Sleep Junkies podcast “So you went from something being a secret to the […]
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Did you know the FDA has approved 27 novel drugs so far in 2019, and two of those are for narcolepsy?! How amazing is that?! The diversification of treatment approaches and new therapies under development and gaining FDA-approval for narcolepsy in the U.S. is SO EXCITING! In this post, I will provide an update on the narcolepsy […]
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Room 116: A Glimpse of the Future It was a basic, boring conference room, but there was nothing basic or boring about Room 116 at the Vancouver Convention Center on Wednesday, Sept. 25, 2019 at 4:30 p.m. As the final session of the final of five days of the World Sleep Congress including World Narcolepsy Day, […]
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When working in traditional offices, I struggled with “sick days.” I didn’t often get colds or flus. I just dealt with my narcolepsy with cataplexy, which was fairly stable and “well-managed” by the time I took these jobs. Yet narcolepsy was still with me every day, to varying degrees — from minor annoyance to extreme […]
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The week leading up to World Narcolepsy Day has quickly become one of the most surreal weeks of my life! I’m already speechless seeing the photos, articles, videos and radio segments from around the globe honoring World Narcolepsy Day. World Narcolepsy Day Activities: I will travel to Vancouver, Canada tomorrow to celebrate World Narcolepsy Day […]
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Twelve years ago today, I was diagnosed with a classic case of type 1 narcolepsy with cataplexy, just four days after my 24th birthday. So as of today, four days after my 36th birthday, I’ve now spent one-third of my life officially as a “person with narcolepsy” (not counting the years of symptoms before diagnosis). For fun today, […]
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Two people with narcolepsy. Double the insight! A few minutes into recording, I realized I’d never recorded a podcast with a fellow person with narcolepsy before. This interview with Leyla Sarper for the “Present Not Perfect” podcast was such a neat experience. I’m super excited to share this with you today! Listen now on Spotify here. […]
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Friends: I’m SO beyond thrilled to share the news with you today that Project Sleep proudly partnered with IFC Films and Ode to Joy Director, Jason Winer, to create a PSA to raise awareness about narcolepsy with cataplexy. Please watch and share with friends! Teamwork makes the dream work I am so grateful to Jason and […]
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