Living with Narcolepsy
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 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 MoreReady 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 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 MoreExciting News! Giving a TEDx Talk in San Diego
SO beyond excited to share this news: I’ll speak at TEDxSDSU on March 22, 2020 in San Diego, CA! Giving a TEDx talk has been a major life goal for about 7 years now, when i put it in my art journal as one of my major aspirations. And I’ve applied to many over the…
Read More“I will change how I treat my patients because of your talk.”
Last month, I gave one of my favorite presentations at the 10th Biennial Pediatric Sleep Medicine Conference hosted by my alma mater, Brown University. My “TED-style talk” had two key messages: Prescribing social support to people with narcolepsy, Partnering with patients, patient leaders and organizations to develop patient-centered research toward recognizing and addressing stigma. I’d spent…
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 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 MoreTaking a “Sick Day” with Narcolepsy
When working in traditional offices, I struggled with “sick days.” I didn’t often get colds or flus. I just dealt with my narcolepsy with cataplexy, which was fairly stable and “well-managed” by the time I took these jobs. Yet narcolepsy was still with me every day, to varying degrees — from minor annoyance to extreme…
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