Excessive Daytime Sleepiness
Narcolepsy Treatments 2021 Update: Drug Development & Clinical Trials
Drug development in the narcolepsy space has gained incredible momentum the past few years. I shared progress updates in 2018 and 2019, and am excited to publish a new update today! There are new and upcoming narcolepsy treatment options in these categories: Wake-promoting or stimulant medications Histamine-directed medications Nighttime medications Hypocretin/orexin agonists Wake-promoting or stimulant…
Read MoreAm 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…
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 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 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 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…
Read MoreOrexin/Hypocretin Agonists are Coming! Part I: Reporting Back from World Sleep 2019
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,…
Read MoreListen: Julie Flygare on Present Not Perfect Podcast in honor of World Narcolepsy Day
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.…
Read More“Ode to Joy” Movie Review From A Person Living with Narcolepsy with Cataplexy
Today, the new feature film, Ode to Joy opens in select theaters (in New York and Los Angeles) and releases via video on demand across the United States. Ode to Joy is a movie about a man, Charlie (played by Martin Freeman) navigating romance while living with narcolepsy with cataplexy. I was not involved in the development…
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