Reporting Back from the International Symposium on Narcolepsy

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…

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“Ask Us Anything!” with Dr. Mignot, Julie Flygare and Watson

Friends! I’m super excited to share that on Tuesday, Sept. 4, at 7 p.m. ET, Project Sleep will host a very special “Ask Us Anything” Facebook Live event, featuring myself along with Emmanuel Mignot, M.D. Ph.D., Director of the Stanford Center for Sleep Sciences and Medicine, and Watson, a chihuahua with narcolepsy. We will answer as many of your…

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2018 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…

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An 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…

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Taiwan Joins Narcolepsy: Not Alone campaign!!

Over the winter holidays, I was thrilled to visit Taiwan and meet with a leading Taiwanese narcolepsy researcher and clinician, Dr. Yu-Shu Huang. I was in Taiwan for an amazing ten-day vacation with my brother, sister-in-law and niece. After a long sleepless journey to Taiwan, I was so glad that we arrived in Taipei at their nighttime, so…

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New Research for Breastfeeding Mothers with Narcolepsy

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…

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Today: 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…

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The Daze Before the Dream

This isn’t your average nap. Living with narcolepsy, my brain demands to go into R.E.M./dream sleep during the day. Pressure builds and I know it’s THAT time for my brain to do its thing. I get up from my cubicle & head out to my car, hoping not to run into anyone I know along…

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Up/Lifted Podcast Featuring Narcolepsy

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…

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