REM Runner Blog
The Power of Community: Supporting One Young Man with Narcolepsy Lifts Us All
These are unprecedented times in the wake of COVID-19. I am sending virtual hugs, healthy vibes and restful nights to each of you. During a time when things feel pretty heavy, I wanted to share a heart-lifting story from my past week. Background: In late February/early March, Project Sleep (in conjunction with the Sleep Research Society)…
Read More“Soooo, you can just, like, fall asleep?!” Spoken Word Poetry on Narcolepsy
“Soooo, you can just, like, fall asleep?!” This video moved me to tears. Please watch and share Kara Sulzer’s powerful spoken word poetry on living with narcolepsy. Kara cuts right to the heart of so many key aspects of living with narcolepsy so quickly, discussing the symptoms, the social misperceptions and the BEST question she…
Read MoreA Moment I’ll Cherish Forever: Meeting my Representative Adam Schiff
On Tuesday, Feb. 10th, I had the opportunity to meet my Representative, Congressman Adam Schiff and thank him in-person for championing the sleep community priorities in Congress for the past three years. I was in Washington, DC for Project Sleep and the Sleep Research Society’s February Hill Day on Monday, Feb. 9th. See our event…
Read More#SleepIn2020 Deadline TODAY for T-Shirts
Project Sleep’s SIXTH annual “Sleep In” will take place on March 13-15, 2020, but today, Feb. 18th is the deadline to order your official shirts. Please support our shirt fundraiser here. Get shirts for the whole fam! Honestly, I get compliments and questions about my Sleep In t-shirts every time I wear one.…
Read MoreExciting News! Giving a TEDx Talk in San Diego
SO beyond excited to share this news: I’ll speak at TEDxSDSU on March 22, 2020 in San Diego, CA! Giving a TEDx talk has been a major life goal for about 7 years now, when i put it in my art journal as one of my major aspirations. And I’ve applied to many over the…
Read MoreYou’re Invited! Join Me for Project Sleep’s New Year’s Celebration
Tune in this Saturday, Dec. 28th, 2019 at 12:00 noon ET for a very special New Year’s Facebook LIVE—celebrating your amazing 2019 and looking ahead with a sneak peek of 2020! On behalf of Project Sleep’s leadership, I will broadcast live from Los Angeles to Project Sleep’s Facebook page this Saturday, Dec. 28th at 12noon ET. You…
Read More“I will change how I treat my patients because of your talk.”
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…
Read MoreCelebrating 10 years of the REM Runner Blog!
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…
Read MoreListen Now: Social Experience of Narcolepsy on Sleep Junkies Podcast
“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…
Read MoreNew and Upcoming Treatments for Narcolepsy 2019! Part II Update from World Sleep
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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