Narcolepsy Research
NARCOLEPSY: NOT ALONE Runs Great Ocean Road Marathon in Australia
Just 9 days until my marathon and I’m super inspired by Louise, Jacob and their crew of 20 people who sported NARCOLEPSY: NOT ALONE for the Great Ocean Road Marathon in Australia last weekend. 12 runners wore the shirts (including 3 young doctors who have promised to spread the word amongst their peers!), and 8…
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…
Read MoreNarcolepsy Podcasts on SleepHub
During my recent visit to Australia, I got to meet Dr. David Cunnington, a sleep doctor in Melbourne. Last fall, I’d “met” Dr. Cunnington virtually when we were both interviewed on the Daily Edition TV program on narcolepsy. He’s one of those unique sleep doctors who is both knowledgeable about narcolepsy and truly CARES about his…
Read MoreVisiting Australia for the Narcolepsy Support Australia Conference
“What could I say that they don’t already know?” This question haunted me in the months, weeks and days leading up to Narcolepsy Support Australia Conference. Over a year ago, when NSG Australia’s leader-extraordinaire, Melissa asked me to be a keynote speaker at their inaugural patient conference, I said “Yes!!!” right away. No question, I wouldn’t miss…
Read MoreNarcolepsy Grand Rounds Speaker and CE Event Keynote at Nova Southeastern University
I leave for Australia in a few days, where I’ll be a keynote speaker at the Inaugural Narcolepsy Patient Conference hosted by NSG Australia. After returning from Australia, I’ll be taking off for Fort Lauderdale! I’ve been invited to speak at Nova Southeastern University on May 8th for their Grand Rounds and a Continuing Education (CE)…
Read MoreCataplexy Caught on Camera – Guest Post by Sally Abboud
Four lovely ladies walk into a photo booth, one has narcolepsy with cataplexy, her name is Sally. Something is funny and as Sally laughs, the camera perfectly captures the stages of her cataplexy attack. Sally (top-middle) describes: This was a photo booth at a friend’s wedding that takes a photo every 5 seconds. The three other ladies…
Read MoreThe Doctors Show Features My Story with Narcolepsy
Tune in to the Doctors TV Show this Monday Feb. 9, I’ll be sharing my journey with narcolepsy – including sleepiness, cataplexy, sleep paralysis and hypnagogic hallucinations . See full information here. Watch TV interview online: Crafting an honest and accurate portrayal of narcolepsy with the Doctors TV Show was a lot of fun. I was blown away…
Read MorePatients Included: Narcolepsy Patient Voice in American Journal of Medicine
The patient’s voice is rarely included in medical journals, but luckily, I love breaking down superficial barriers between patients and medical professionals. Check out: “Narcolepsy: Let the Patient’s Voice Awaken Us”, by Julie Flygare, JD and Sairam Parthasarathy, MD, (American Journal of Medicine, January 2015). I feel so lucky to have collaborated with Dr. Parthasarathy on this project, he’s a doctor…
Read MoreWhy I Love the Jack & Julie Narcolepsy Scholarship
I’m thrilled to share that Project Sleep unveiled the Jack & Julie Narcolepsy Scholarship 2015 to support students with narcolepsy while also fostering awareness of this often misunderstood disorder in high school and collegiate settings. This spring, three high school seniors will be awarded $1,000 toward their college education. Please read FULL application for details. Last year,…
Read MoreSpeaking in Spoons – The Spoon Theory and Narcolepsy
My boyfriend and I speak in spoons. If you don’t know what I’m talking about, read The Spoon Theory by Christine Miserandino now. Seriously, stop everything and visit: http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/. Alex has been really supportive of my narcolepsy from day one. We quickly fell into great routines for managing my excessive sleepiness and cataplexy. Yet, my narcolepsy is so much more than…
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