Narcolepsy
Random Remmie Explains Narcolepsy & Sleep Cycle
“Narcolepsy explained so simply a caveman could understand it.” You may remember Random Remmie from this previous post, but recently she’s became a movie star, featured in two amazing educaitonal videos. The purpose of these videos is to explain narcolepsy to classmates of children with narcolepsy so they can better understand. Please take a…
Read MoreNarcolepsy Service Bird Stolen in LA
I’ve heard of many narcolepsy service dogs, but a narcolepsy service bird? Sadly, I learned of this amazing umbrella cockatoo named Laura, today because she was stolen last week from Southern California resident, Walfrid Whittington as he walked down the street in Los Angeles. The cockatoo helps treat Whittington’s narcolepsy and depression. Whittington reported that the suspect…
Read MoreBook Signing and Speaking at BRPT Symposium
This past weekend, I had the honor of hosting a book signing event and giving a presentation for sleep technologists at the BRPT Symposium in Louisville, KY (Sept 13 – 14, 2013). During my book signing, a few attendees said they had already heard great things about my memoir. Others learned of my story for…
Read MoreIt’s my birthday and I’ll give away FREE E-BOOKS if I want to…
Six years ago today, I celebrated my 24th birthday on a boat cruise with amazing friends and an over-sized sparkly feathered tiara. We drank, sang, and danced the night away. The next day, I couldn’t walk. I spent the day on the couch, sleeping on and off with spasms of muscle tone – terrified by…
Read MoreDeadline TODAY: Register for FDA Narcolepsy Meeting Webcast
Urgent: If you are planning to attend FDA narcolepsy meeting on 9/24 by WEBCAST, you must register by 5:00 p.m. ET today (9/13/13). I highly encourage all people with narcolepsy/IH and loved ones around the world to attend this webcast. Let’s show our community’s strength and support! Act now and reserve your spot: http://patientfocusednarcolepsy.eventbrite.com/.…
Read MoreFree E-Book Weekend Sept. 14-15, 2013
Recently, the NARCOLEPSY: NOT ALONE campaign soared past our 500 photo goal, with over 725 photos in the gallery now. Thank you for your support, I can’t tell you how much this campaign means to me. Let’s celebrate with free books! Download the award-winning Wide Awake and Dreaming: A Memoir of Narcolepsy e-Book for FREE on Sept. 14-15, 2013. When: Saturday…
Read MorePresenting Unite Narcolepsy’s Webinar on Communication & Advocacy
Please join me for Unite Narcolepsy’s Webinar 3, “Harmony: Putting Your Best Voice Forward” this Wednesday, Sept. 11 at 2:00 p.m. ET. Register here. I will co-lead with Kim McCleary. Communicating about narcolepsy can be overwhelming. Where to begin? What to highlight? But have no fear, Unite Narcolepsy is here! Nothing excites me more than fine-tuning communication skills…
Read MoreHelp Unite Narcolepsy Hit 1,000 Survey Responses!
In less than two weeks, Unite Narcolepsy has collected 961 survey responses. Please help us reach 1,000 by starting survey here – people with narcolpesy/IH and thier loved ones around the world are invited to participate! To be honest, I can’t believe we are so close to 1,000. Setting this goal, I thought maybe we’d…
Read MoreNo Longer Living in Silence – Guest Post by Jennifer Slodysko
When I learned about Julie’s NARCOLEPSY: NOT ALONE campaign, I realized that I had the perfect platform to help raise awareness. As a nursing student, I thought I could do a presentation about narcolepsy to my nursing class, and to ask for volunteers to take a campaign photo. My hope was that my classmates would carry…
Read MoreNARCOLEPSY: NOT ALONE Surpasses 500 Photo Goal!!!
A few weeks ago, I set a challenging goal for the NARCOLEPSY: NOT ALONE campaign – to collect 500 photos by Sept. 1st. Today is Sept. 1st and the gallery contains 576 photos from 46 U.S. States and 28 countries around the world! I could not have done this ALONE. Thank you for your love and support…
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