Rare Disease
Upcoming 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 MoreRising Voices of Narcolepsy 2018 Program is Now Accepting Applications!
“There are two ways we can increase the public’s understanding of narcolepsy — we can push information out or we can pull them in with our stories.” -Rising Voices of Narcolepsy Workbook People ask me: “How do I get started sharing my story?” Project Sleep’s Rising Voices of Narcolepsy program is my answer, it is leadership…
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 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 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 MoreLifting Weights and Each Others’ Spirits While Living with Narcolepsy and Cataplexy
One of the best parts of the Griffith Park Trial Marathon took place about 10 days BEFORE the race. Arriving home from work one night around 8:00 p.m., I was totally drained and wanted to call it a night, but I had to go running. Ugh. I’d run over 270 miles in four months, and only had…
Read MoreI did it!! Conquering Griffith Park Trail Marathon with Narcolepsy
On Saturday, March 4, 2017, I took on the Griffith Park Trail Marathon as a person with narcolepsy to raise funds for Project Sleep’s Jack & Julie Narcolepsy Scholarship. As I said here, I was nervous and uncertain. On the morning of the race, I woke up lethargic and stiff, but I showed up. I had…
Read MoreWhen Your Body Says “OH HELL NO” in Italy – Practicing Radical Self Care On The Fly
I felt a scratch in my throat at Stanford’s Medicine X conference. Flying to Italy, pressure spread across my forehead. Waking early the next morning in Bologna, a breeze swirled in through my open hotel window. I smiled and then I coughed… And coughed… And coughed. It was official. I was sick. In Italy. How could…
Read MoreWhat is my secret? Am I a “typical” person with narcolepsy?
I received the following comment on my recent blog post and wanted to respond here. ************ Dear N. Leptic, Thank you for taking an interest in learning more about my experience with narcolepsy. First of all, I am so sorry to hear about your challenging experience with narcolepsy. It sounds like you are facing some very real and significant…
Read More“I Have Narcolepsy. Do You?” on Sleep Success Summit
This Monday, August 8, my presentation, “I Have Narcolepsy. Do You?” will air to tens of thousands of online viewers as part of the Sleep Success Summit. Register for free today. The Sleep Success Summit is a free online event (August 8-15), featuring over 30 experts discussing a wide range of sleep health and sleep disorder topics. With tens of thousands of viewers expected…
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