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 More
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 More
What’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 More
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 More
Am 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
World 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 More
Special 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
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 More
A 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