narcolepsy memoir
So This is 35…
September was a whirlwind and somewhere in there, I turned 35. So now it’s been 11 years since I was diagnosed with type 1 narcolepsy with cataplexy and five years since I moved to Los Angeles and founded Project Sleep. Where the heck did the first half of my 30s go? A few flashbacks come…
Read MoreJoin Me in Sydney! Narcolepsy Australia Event
Join Us In Sydney! I’m so excited to head to Sydney, Australia for the “Insight” Peer Event on October 13, 2018 hosted by Narcolepsy Australia! Only a few spots left, so register today: https://register.narcolepsyaustralia.org.au/. I’m preparing a new presentation for this speaking engagement – with exciting updates since I last visited to keynote the Narcolepsy Australia conference…
Read MoreNarcolepsy Meets Design Thinking – Join Me for Unique Boston Event
Please join Project Sleep in Boston for “Innovations in Narcolepsy Awareness” on Saturday, Sept. 15, from 10 a.m. – 4 p.m. at the NonProfit Center (89 South Street, Boston, MA – one block from South Station). This one-day meeting and interactive workshop will empower and educate advocates while also advancing novel approaches to educating the public…
Read MoreUpcoming Webinar: Translating the Patient Story into Action
Friends, I’m so honored to be a speaker on an upcoming webinar, “Translating the Patient Story into Action” taking place on Wednesday, August 22nd at 2:00 p.m. ET. Please register today to save your spot! This event is hosted by the Society for Participatory Medicine, one of my very favorite organizations ever. The Society for Participatory Medicine…
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 MoreSpeaking at the Sweet Dreams and Nightmares Sleep Symposium in Tallahassee
Last month, I had the honor of giving two presentations to allied health care professionals including physicians, nurse practitioners, respiratory therapists, social work experts, and sleep technologists at the Sweet Dreams & Nightmares Sleep Symposium presented by Tallahassee Memorial Healthcare and the Florida Medical Association. With the west coast to east coast time change, the…
Read MoreTaiwan 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 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…
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