Cataplexy

I’m thrilled to share Project Sleep’s new narcolepsy awareness video series. These videos feature five of our Rising Voices of Narcolepsy speakers sharing their personal stories, interwoven with key narcolepsy facts. I hope you will be as moved as I am by these brave stories and share them today: WATCH NOW SHARE ON FACEBOOK TWEET IT   Why […]

{ 0 comments }

“We are witnessing a revolution of our understanding of narcolepsy.” – Dr. Emmanuel Mignot, M.D. Ph.D., Director of the Center for Sleep Sciences and Medicine, Stanford University 2018 was an exciting year for narcolepsy research and drug development. Here’s my top six research highlights of 2018 that you should know about! 1. Narcolepsy & the […]

{ 0 comments }

Hello Audiobook! Today, I’m SO beyond thrilled to release the AUDIOBOOK for Wide Awake and Dreaming: A Memoir of Narcolepsy! Available now on Audible, Amazon and iTunes. Listen to a sample and download here (your first audiobook with Audible is always FREE!). Watch Preview Narrating is an Art Recording the audiobook is something I’ve been […]

{ 2 comments }

This past week, I was honored to represent Project Sleep at the 7th International Symposium on Narcolepsy from Sept 9 – 13, 2018 in Beverly, MA. At this meeting, leading narcolepsy researchers and clinicians from around the world came together to discuss developments in the clinical features of narcolepsy, promising treatment advances, and the underlying neurobiology […]

{ 0 comments }

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 […]

{ 0 comments }

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 […]

{ 2 comments }

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 […]

{ 1 comment }

Guest Contributors: Emily Barker, Ph.D. and Katherine Sharkey, M.D., Ph.D. New research published in the journal Sleep Medicine suggests that lactating women who take Xyrem (sodium oxybate) to treat narcolepsy with cataplexy can time their breastfeeding to avoid exposing nursing infants to elevated levels of the drug in milk (Barker et al., 2017). Data from […]

{ 0 comments }

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 […]

{ 0 comments }

Up/Lifted Podcast Featuring Narcolepsy

by julie on July 9, 2017

I’m honored to be the first female guest on the Up/Lifted Podcast this week! Up/Lifted is a cool new podcast hosted by Arin Gragossian about “personal history, pivotal moments, & honest stories. And sometimes lifting massive amounts of weight.” On this show, Arin and I did NOT lift weights, but talked living with invisible chronic health conditions, narcolepsy, Project […]

{ 0 comments }