Sleep nonprofit
Celebrating 3 years of Wide Awake and Dreaming: A Memoir of Narcolepsy – An Honest Reflection
Writing for me is time-traveling. On January 16, 2012, I sipped a steaming hot soy latte at my favorite coffee shop in Arlington, Virginia, cued up the classical piano in my headphones and closed my eyes. Here we go! On this day, my time-traveling destination was a hotel room in Albany, New York – four years earlier. The subject…
Read MoreWhat I Said: Julie Flygare’s MedX Ignite Talk Transcript
REM Runner’s Note: On Sept. 24, 2015, I had the huge honor of stepping on the MedX main stage at Stanford Medical School to give an ePatient Ignite Talk. This is (more-or-less) what I said: ************ Diagnosed with narcolepsy at age 24, I was excited to tell my friends and family. Finally! I had legitimate medical terms…
Read MoreNarcolepsy Presentations at UCLA Med School 2015 – “A learning experience for both medical students and seasoned physicians.”
On Sept. 1 – 3, I had the extraordinary opportunity to speak at UCLA Medical school three nights in a row, sharing my inspiring narcolepsy journey with 120 first-year medical students and a dozen faculty members. The first-year students were just days into their medical education – energetic and eager to learn! I spoke as part of the students’ required…
Read MoreMy First Standing Ovation – Speaking at the Hypersomnia Conference 2015
Recently, I traveled to Atlanta to speak at the Hypersomnia Conference 2015. The conference featured a great variety of support groups and fantastic presentations by medical leaders, educational experts, patient advocates and a disabilities attorney. Uniquely, the conference also included hypersomnia, narcolepsy and KLS speakers and attendees, so we could share and learn from each…
Read MoreWorking with Narcolepsy Part II: Hunting for a Nap Room
In December 2014, our office moved from Downtown Los Angeles to Irwindale, CA. My commute went from 7 miles to 25 miles. At the same time, our office environment went from private offices to cubicles. To be fair – I was well informed about this before I signed up for the job. (Read Part I…
Read MoreMeet Owen, 11 Year Old Boy Living with Narcolepsy
Recently, I received a video from a mother of a young boy with narcolepsy. Warning: I cannot watch this video without crying. Brooke describes: “My 11-year-old son, Owen, was diagnosed with narcolepsy last spring. It was and is scary, and there just isn’t a lot of information out there, especially positive information! So you have…
Read MoreProject Sleep Awards 10 Scholarships to Students with Narcolepsy Entering College
While crossing the finish line of the San Diego Rock n Roll Marathon was an awesome moment, my biggest prize came yesterday when Project Sleep gave out TEN scholarships to students with narcolepsy through the Jack & Julie Narcolepsy Scholarship program. Meet the 2015 Jack & Julie Narcolepsy Scholarship Recipients: View Scholarship Awards Announcement View/Download…
Read MoreNarcolepsy Epidemic in Hollywood – Homer Simpson Latest Victim
It seems that Hollywood has a surprisingly large percentage of cases of narcolepsy, a disorder affecting 1 in 2,000 people, about 200,000 Americans and 3 million people worldwide, including many children and young adults. The latest Hollywood victim is Homer Simpson. Word on the street is he going to discover he has narcolepsy in the…
Read MoreThe Final Countdown… REM Running a Marathon this Sunday!
On my final training run tonight, I got to thinking — last time I ran a marathon, I ended up writing a book about it. I wonder what the Rock n Roll San Diego Marathon has in store for me! So far, this marathon experience has been a wild ride. I started training in the midst of…
Read MoreRaising Narcolepsy Awareness at Nova Southeastern University
Grand Rounds is the important educational tradition of doctors and healthcare professionals getting together to learn about evolving areas which may be outside of their core practice. However, patients are rarely invited to participate, so sharing my narcolepsy journey at Nova Southeastern University (NSU)’s Grand Rounds on May 8, 2015 was a HUGE honor. This is why, just 24 hours…
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