Living with Narcolepsy
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…
Read MoreNew 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…
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 MoreJumping Into a New Chapter of My Journey
Hi friends! I’m so beyond excited to share that as of February 12, 2018, I made a huge career change and took on a new role as President & Chief Executive Officer (CEO) of Project Sleep! Read the full announcement here. Wait, what’s the difference? Some people have said they thought I was already serving in this…
Read MoreThe 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…
Read MoreHave You Told Your Members of Congress About Narcolepsy?
I have a confession. I realized recently, “OMG, I haven’t told my Members of Congress that I have narcolepsy!!” While I consider myself a vocal advocate, I haven’t informed my legislators that I CARE about narcolepsy and sleep research and they should too. So, I’m excited to share that I will be going to Capitol Hill…
Read MoreUp/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…
Read MoreWatch Now: Narcolepsy Keynote Presentation with Julie Flygare
I’m so excited to share my Health:Further keynote presentation video. I delivered this speech to over 1,000 healthcare professionals in Nashville, TN last year. My speeches are rarely online – so be sure to check this out! Watch video: I shared here how mad nervous I was for this speech, but I managed to pull it…
Read MoreCNN Article on My Marathon with Narcolepsy
I’m thrilled to share CNN Health’s feature article Runner: Having narcolepsy is harder than a marathon. This Sleep Awareness Week, please share with your friends and family to raise critical narcolepsy awareness. Working with CNN on this piece was particularly meaningful. I first spoke with the reporter, Maria, in January two months before the race after she’d read…
Read MoreSpeaking about Narcolepsy at Sleep Symposium
On Saturday, March 25, I was honored to give my narcolepsy presentation at Hoag Health’s Sleep Symposium in Irvine, CA. Because I work full-time with a long commute, I got home fairly late on Friday night and started counting backward from when I was supposed to be in Irvine on Saturday at 9:00 a.m. The…
Read More