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
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
Canadian Narcolepsy Research Opportunity
?? 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…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
Ready for Awareness? World Narcolepsy Day 2020 is one month away!
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…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