Narcolepsy Diagnosis
Guest Post: Dear Terrie
Guest post by Terrie in response to the “Dear Diagnosis” Blogathon prompt. Read more letters and join us here. ——– Dear Terrie, You are about to go on a journey that will take you to many lows along the way. Your doctor will soon confirm that you have Narcolepsy. You will experience all the symptoms…
Read MoreDear Julie
This is my personal response to my “Dear Diagnosis” Blogathon prompt. Read other responses and join us here. ——— Dear Julie, You will be okay. You will be okay. I wish I could reach through time and give you a big hug. I wish I could protect your heart from the pain. It will not go…
Read MoreJoin Me! Narcolepsy Twitter Chat on 10/31/13
This Thursday, Oct. 31, 2013 at 11:45 a.m. ET, join me for an exciting Narcolepsy Twitter Chat with narcolepsy medical experts and patient advocate leaders. Use Hashtag #Nchat or follow along on TweetChat here. Co-leaders include The Global Genes Project (@GlobalGenes), Dr. Shelby Harris of Montefiore Medical Center (@MontefioreNYC), Julie Flygare, JD (@REMRunner) and Wake Up Narcolepsy (@WakeNarcolepsy). Beginning at…
Read MoreJoin Us: FDA Initiative Wrap-Up Webinar
The FDA meeting was an amazing experience. Let’s re-cap and look ahead to the future! What: Unite Narcolepsy Wrap Up WebinarWhen: Thursday, Oct. 10, 2013 at 2:00 p.m. ETDescription: We’ll recap what happened at the FDA meeting, review ways that patients and other stakeholders can offer their perspective to the agency, and look ahead at…
Read MoreDear Diagnosis Blogathon
If you could go back and speak to yourself on your diagnosis day, what would you say? “Dear Diagnosis” is a Blogathon inviting all narcolepsy and chronic disease bloggers to write a letter to yourself on your diagnosis day. BLOGATHON PARTICIPANTS: An Unnatural Athlete – “Dear Jill” Norexin – “Dear Meaghan” Guest Post –…
Read MoreFDA Narcolepsy Meeting Video – Watch Now!
The Webcast Recordings of FDA’s Narcolepsy Meeting on Sept. 24, 2013 are now available. Watch Here: PART 1 – Opening to Break PART 2 – Break to Closing Get Involved: REM Runner’s Recap and Photos Take the Unite Narcolepsy Survey Submit Comments to the FDA Docket
Read MoreUnite Narcolepsy Interim Survey Results Paint Honest Picture of Challenges Facing Narcolepsy Community
In just six week, the Unite Narcolepsy’s patient survey has collected over 1,350 responses, including over 1,000 responses directly from patients diagnosed with narcolepsy. The survey results paint a powerful picture of the challenges facing the narcolepsy community – including extensive delays in diagnosis and many unmet medical needs. The Interim Survey Analysis will be shared…
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 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 MoreJoin Me for U.S. News #SLEEPHEALTH Twitter Chat
This Wednesday, Sept. 4, 2013 at 1:00 p.m. EST, U.S. News will host a Twitter on sleep health and sleep disorders. I am co-leading this event along with @USNewsHealth, @nih_nhlbi, @NIOSH, @CDCChronic, @REMRunner and @PennMedNews. Join the conversation: http://tweetchat.com/room/sleephealth (use hashtag #sleephealth) When: Wednesday, Sept. 4 at 1 p.m. EST. Why: Between 50 and 70 million U.S. adults have sleep or wakefulness disorders, which include…
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