Narcolepsy
Can We Reach 500 Photos by Sept 1st? Prize: Free E-Books for All!
We have almost 400 pictures in the NARCOLEPSY: NOT ALONE gallery! I am overwhelmed and thrilled by the amazing international response. Can we reach 500 by Sept. 1, 2013? *IF* we reach 500 by Sept 1 at 11:59 p.m., I will give away free e-books on the weekend of Sept 14 – 15, 2013, during…
Read MoreJoin Me for the First Ever Narcolepsy Webinar Series Starting Thursday 8/29/13
This Thursday, Aug. 29, 2013 at 2:00 p.m. (EDT), Unite Narcolepsy will host the first ever webinar for the narcolepsy patient community. The webinar is free and open to anyone who’d like to participate. Register here! This is the first in a series of four webinars to help narcolepsy advocates navigate the upcoming FDA Meeting on Sept. 24, 2013. Thursday’s topic will…
Read MoreReflections on Narcolepsy: Guest Post by Tim Josiah Kavanagh
REM Runner’s Note: Tim created this unique photo for the NARCOLEPSY: NOT ALONE campaign. Read his amazing description below. Thank you, Tim! Tim’s Guest Post: Having narcolepsy can be confusing. Reality as experienced by a narcoleptic may often be distorted. Dream fragments live large in the mind and memories are unreliable. It can sometimes be…
Read MorePeople with Narcolepsy Pen Pals: Guest Post by Carrie-Ann Burns
REM Runner’s Note: I have enjoyed watching the “People with Narcolepsy Pen Pal” program take off. This is a beautiful positively-spirited group and I’m thrilled to feature this guest post. Carrie-Ann’s Guest Blot Post: I would just like to thank Julie Flygare for the opportunity to share this group among her fans, followers and friends! I…
Read MoreRandom Remmie Joins NARCOLEPSY: NOT ALONE Campaign Guest Post by Julie Barfuss
Meet “Random Remmie” – she’s had narcolepsy for as long as she can remember. She hates making her bed, she has a lot of pajamas, slippers, and a blue blanket. She’s really random. CLICK IMAGES TO VIEW SLIDESHOW: About the Artist: Julie Barfuss has lived in Utah her whole life. She doesn’t remember not being…
Read MoreThe Path to Narcolepsy Diagnosis: Julie Flygare Narcolepsy Awareness Video #21
I’m thrilled to release my 21st narcolepsy awareness video today, describing the path to a narcolepsy diagnosis. Watch below or on YouTube. Thank you so much for watching my video. Come back soon for more! A big thank you to Alex Withrow for his expert video production skils, you make me look good. 🙂 Watch…
Read MoreMy Narcolepsy Angels: Guest Post by Racheal LeBrun
REM Runner’s Note: “What does the NARCOLEPSY: NOT ALONE campaign mean to you?” I’m inviting participants to write guest posts about their campaign experience. Thank you, Racheal for sharing your story! Guest Post by Racheal LeBrun: For me, at age 29, narcolepsy has been a very tough journey of struggling to live my life during…
Read MoreSave the Date: FDA Narcolepsy Public Meeting on Sept 24, 2013
Interested in shaping future narcolepsy drug development? Here’s your chance! On September 24, 2013, FDA will host the Narcolepsy Public Meeting to obtain patients’ perspectives on the impact of narcolepsy on daily life as well as the available therapies for narcolepsy. This past year, we worked together to secure this tremendous opportunity with FDA. The September 24 meeting…
Read MoreNARCOLEPSY: NOT ALONE 10 Days Update
Ten days ago, I launched the NARCOLEPSY: NOT ALONE campaign with excitement and nerves. Would people join me? Today, the campaign has 130 photos from 31 states and 14 countries (VIEW GALLERY & MAP)! Highlights: Countries include: Australia, Canada, Columbia, Ireland, Japan, Kenya, The Netherlands, New Zealand, South Africa, South Korea, Spain, United Kingdom, United States, and Wales. One…
Read MorePausing to Say I Love You: Guest Post by Michelle Hemingway
REM Runner’s Note: I met Michelle at my first NN Conference five years ago and we’ve remained dear friends ever since. In this post, Michelle describes participating in the NARCOLEPSY: NOT ALONE campaign. Michelle’s Guest Post: I was honored to participate in the Narcolepsy: Not Alone campaign. And that is exactly how my family and friends felt…
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