Narcolepsy Research
Syncopation – Dancing with Narcolepsy & Cataplexy Guest Post by Elaine Golden
REM Runner’s note: Recently, Elaine of Chica Siesta joined the NARCOLEPSY: NOT ALONE campaign. After reading her beautiful blog, I asked her to share in a guest post here. Please enjoy Elaine’s powerful and fresh voice. Read more at chicasiesta.wordpress.com. Syncopation – by Elaine Golden Recently, my friends and I went swing dancing at a jazz club…
Read MoreThe Simpsons Modifies Homer Narcolepsy Episode “Somewhat” After Reading Narcolepsy Article
When the Simpsons premieres tonight at 8pm ET/PT, Homer will get “narcolepsy”. I’m thrilled to report that Executive Producer, Al Jean tweeted me: “The episode was modified somewhat after I read the extremely compelling article you wrote. Not sure you will be 100% happy…” Thank you, Al Jean and the Simpsons for thoughtfully reading and modifying…
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 III – When Caring Comes Naturally
After my boss and leadership got even more involved – the nap room situation improved quickly. (Read Part I and Part II of this story.) Nap Bench on the Move: The nap bench was moved again, this time to a small room on the second floor along a nice secluded quiet hallway. The door’s sign was changed to Wellness Room.…
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 MoreYOU CAN AND YOU WILL (Marathon Part II)
As I crossed the start line of the San Diego Rock n Roll Marathon, runners started passing me. I laughed when a pack of Elvis(s) passed me. Typical. “Slow and steady. No one to beat. Nothing to prove,” I told myself. My shirt was drenched with sweat within 3 miles. Soon my hands raisined and…
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