Cataplexy
Narcolepsy in The Mysterious Benedict Society New Disney+ Series
A review of Ep. 1-2 written by a person living with type 1 narcolepsy with cataplexy. Please note: may contain spoilers. Anyone else excited to watch Episode 3 of “The Mysterious Benedict Society” this weekend? Here’s my review of Episodes 1-2’s portrayal of narcolepsy! On June 25th, the first two episodes of “The Mysterious Benedict Society”…
Read MoreNarcolepsy 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 MoreWorld Narcolepsy Day 2020 Activities Starting Soon!
World Narcolepsy Day 2020 is quickly approaching on Tuesday, September 22, 2020 and Project Sleep has an exciting schedule of activities planned for September. This is the second annual World Narcolepsy Day aiming to raise awareness of narcolepsy on a global scale. I’m a little excited, can you tell? Project Sleep’s Schedule of Activities While international…
Read MoreSpecial Online Event: Presenting My Narcolepsy Story & Book Reading
Join me for a very special FREE ONLINE EVENT! This Sunday, May 10th at 8:00 p.m. EDT, tune in to Project Sleep’s Facebook Page to hear my inspiring narcolepsy presentation and to read a few favorite passages from my memoir. Full details about the broadcast. I’ve presented this around the world in Italy, Ireland, Sweden,…
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 MoreShare! Narcolepsy with Cataplexy PSA Video with Ode to Joy Movie
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…
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…
Read MoreListen Now: New Interview on Wake Up Narcolepsy’s Narcolepsy 360 Podcast
A few months ago, I had the pleasure of sitting down with Claire Crisp, Executive Director of Wake Up Narcolepsy (WUN), to record an interview for WUN’s Narcolepsy 360 podcast. This was a meaningful experience and a lot fun to share this conversation with Claire, who is an amazing leader, advocate and friend in the narcolepsy…
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