Narcolepsy
Guest Post: Dear Katie
Guest post by Katie in response to the “Dear Diagnosis” Blogathon prompt. Read more letters and join us here. ——– Dear Katie, First of all, that jaw drop of yours was hilarious! I know you’re conditioned to hear “I don’t know” if the letters “D” and “r” come before a name, but realize where you are…
Read MoreGuest 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 MoreNarcolepsy Network Conference 2013
On Oct. 18 – 20, I attended the Annual Narcolepsy Network Conference in Atlanta, GA, where I led four sessions along with selling and signing books. It was a whirlwind weekend – catching up with old friends and meeting new friends. The conference had a fantastic line-up of narcolepsy researchers and clinicians. These doctors were…
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 MoreRaising Narcolepsy Awareness at KYSS Conference
On October 12, I had the honor of speaking at Kentucky Sleep Society’s 15th Annual Sleep Medicine Conference in Louisville, KY. The Society’s membership includes sleep doctors and sleep technicians. I gave my favorite presentation – my personal story of narcolepsy from beginning symptoms all the way through the NARCOLEPSY: NOT ALONE campaign. Highlighting the…
Read MoreThe 4th Annual Sleepy Pumpkin Patch 2013
Happy Halloween! Join my 4th annual Sleepy Pumpkin Patch by creating your own SLEEPY PUMPKIN. Be creative – anything sleep or dream related goes! Send a photo of your pumpkin to: REMRunner01@gmail.com by October 31st. Don’t feel like carving? No problem, you can always draw a picture or cartoon to submit. Thank you to Sarah and John…
Read MoreNarcolepsy Network Conference 2013 – See you in Georgia!
This weekend, I will be speaking and signing books at the 28th Annual Narcolepsy Network Conference in Atlanta, GA. This is always an exciting weekend for me – as I get to see old friends and meet many new friends! Books: I’m offering a discount conference rate on personalized signed copies of Wide Awake and…
Read MoreAnother Restless Night: Poem by Denna Noah
Darkness fallsSleep eventually tooSandman fails to allow deep slumberLike he allows for you My body is exhausted And it cannot keep onIt shuts itself downUnfortunately not for long In your eyes I appear to restBut here, where I amIt’s such a mess Shhhhh I hear him comingCircling through my house Walking room to roomI remain quiet as…
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…
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