Narcolepsy Treatment
Live Book Events: Reading Narcolepsy Memoir
This Thursday! Join me for the FIRST-EVER online live reading of Wide Awake and Dreaming: A Memoir of Narcolepsy! I will go LIVE via my Instagram (@REMRunner) to read the first chapter of my book: Melting, this Thursday May 13th at 8pm ET. After I read the chapter, I’ll answer any questions you have live about…
Read MoreWhat’s the SOCIAL experience of living with narcolepsy?
Your social life experiences with narcolepsy matter! I’m excited to share a new survey that Project Sleep is conducting to better understand the social experiences and unmet needs of people living with narcolepsy and idiopathic hypersomnia. This survey is for individuals diagnosed with narcolepsy or idiopathic hypersomnia (18+ years old). It should take about 10-15 minutes, and…
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 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 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 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…
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 MoreLiving One-Third of My Life with Narcolepsy
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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