Posts Tagged ‘Narcolepsy’
My 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 MoreUpdate: The Simpsons Executive Producer Responds
Over the weekend, the Executive Producer of The Simpsons, Al Jean, corresponded briefly regarding the Homer Simpson narcolepsy news via Twitter. First, he tweeted “.@thesimpsons Extremely interesting article about the true dangers of narcolepsy” to share the NY Post article on my experience with narcolepsy (re-published from Women’s Health Magazine). View the tweet here and retweet! I responded,…
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 More5th Grader Raises Narcolepsy Awareness at School
This past year has been very tough for Daishia, age 11, who was recently diagnosed with narcolepsy with cataplexy. In addition to narcolepsy, she is also dealing with a seizure disorder, migraines and obstructive and central sleep apnea. “I wish I could take all her pain and struggles away and make things easier for her,” describes her…
Read MoreNarcolepsy in the News: Narcolepsy Video Featured on Today Show and Inside Edition
Narcolepsy awareness is on FIRE this fall! This is thanks to the narcolepsy PSA series airing on national TV, The Daily Edition segment in Australia and Sarah Wheaton’s video of cataplexy (a symptom of narcolepsy) going viral on Reddit. As a narcolepsy spokesperson and author, it’s great to see narcolepsy gain international media attention. I hope we can continue promoting truthful…
Read MoreGuest on HuffPost Live: The Psychological Side of Illness
The psychological side of coping with narcolepsy is sometimes as challenging as the physical. I was thrilled to join HuffPost Live for an important discussion, “How To Manage The Psychological Side Of Illness” on Friday, Nov. 21, 2014. Watch below or here: Host Nancy Redd welcomed an inspiring panel of health advocates including yours truly, Juile Flygare (@REMRunner) Founder…
Read MoreCelebrating 5 Years of Narcolepsy Advocacy
This week marks five years as a narcolepsy advocate. When I published my first REM Runner blog post, I “came out” publicly after two years of hush-hush. I didn’t know where this would lead me, but every fiber in me ached to speak up and make change. Once I began, I watched myself devote time and energy I didn’t know I had. The momentum…
Read MoreUnveiling the new NARCOLEPSY: NOT ALONE website!
I’m so excited to share Project Sleep’s new NARCOLEPSY: NOT ALONE™ campaign website at: www.narcolepsynotalone.com. When I started this campaign last year, I never imagined it would become such an empowering international movement. Now, NARCOLEPSY: NOT ALONE™ is the world’s largest social media narcolepsy awareness campaign – setting a bold new precedent that narcolepsy is not a joke, but a real disorder…
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