Children with Narcolepsy
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 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 MoreThe 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 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 MoreListen Now: New Interview on Wake Up Narcolepsy’s Narcolepsy 360 Podcast
A few months ago, I had the pleasure of sitting down with Claire Crisp, Executive Director of Wake Up Narcolepsy (WUN), to record an interview for WUN’s Narcolepsy 360 podcast. This was a meaningful experience and a lot fun to share this conversation with Claire, who is an amazing leader, advocate and friend in the narcolepsy…
Read MoreWATCH NOW: Project Sleep’s FB Live Narcolepsy Video with Dr. Emmanuel Mignot and Watson
Last week, I was thrilled to spend the afternoon with Dr. Emmanuel Mignot and Watson (Dr. Mignot’s chihuahua living with narcolepsy with cataplexy). Together, we recorded Project Sleep’s first Facebook Live video at Stanford Medical School. In this “Ask Us Anything” FB Live video, we fielded a wide variety of questions from the future of…
Read More2018 Exciting Update: Advancing Novel Treatment Options for Narcolepsy
One of my biggest takeaways from the APSS 2018 SLEEP Meeting last month was the great amount of drug development underway for narcolepsy! Below is a list of some of the emerging treatments “abuzz” at #SLEEP2018. These are at various stages in development, and it’s hard to predict how quickly each will advance to (hopefully) gain…
Read MoreAn Unforgettable Trip to Sweden to Speak about Narcolepsy
I recently returned from Sweden, where I was honored to be the keynote speaker at a narcolepsy event hosted by Narkolepsi Föreningen, an association for people affected by narcolepsy due to the Pandemrix vaccine against swine flu in 2009-2010 and their relatives. The retreat took place on May 11-13, 2018, but I traveled to Sweden a week early…
Read MoreToday: Please Ask Your Representative to Co-Sign Narcolepsy Research Letter
Hi friends! I’m so excited to share an amazing opportunity to support critical narcolepsy research THIS WEEK! My Representative, Congressman Schiff of California, is preparing to send a letter to NIH inquiring on the current size, scope, and direction of the narcolepsy portfolio (See Letters). This letter will encourage NIH to support the full spectrum of narcolepsy…
Read MoreMy best hallucination yet! A Visit from the Phantom Foot Massager
During lunchtime today, I went to my nap room at work, cuddled up into my lovely blanket from Ireland and quickly fell asleep. Next thing, I awoke to the most AMAZING foot massage!! Oh la la. My feet were sore from intense yoga classes over the weekend, so I really appreciated the free yummy foot massage from…. um…. my phantom foot…
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