Narcolepsy

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 […]

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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 […]

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Canadian Narcolepsy Research Opportunity

by julie on February 5, 2021

🇨🇦 Canadian Friends!   There is a very cool research study underway in Montreal led by top international narcolepsy researchers, currently looking for people with narcolepsy type 1, narcolepsy type 2, and idiopathic hypersomnia (IH) to participate. Studying brain profiles of narcolepsy type 1, type 2 and IH Description: To better understand the brain of […]

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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 […]

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Am I a TYPICAL person with narcolepsy?

by julie on September 18, 2020

“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 […]

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Less than one month until World Narcolepsy Day on Sept. 22, 2020, and I cannot wait for this second annual day dedicated to raising narcolepsy awareness on a global scale. World Narcolepsy Day 2020 is co-led by 26 non-profit patient advocacy organizations on six continents around the world. See all the orgs listed here. Last […]

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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, […]

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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) […]

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“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 […]

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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 […]

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