Narcolepsy
Link between H1N1 flu and narcolepsy in children and adults: SLEEP 2013 Research Update Part I
At SLEEP 2013, I attended many fascinating sessions exploring the frontier of sleep science. I am not a scientist, but as a sleep and narcolepsy advocate, I will provide major takeaways from SLEEP 2013’s scientific program in upcoming blog posts. At the meeting, new data from Finland, France and China further suggested a link between…
Read MoreHello from SLEEP 2013!
This week, I attended and spoke at the APSS SLEEP Meeting, a.k.a. “the Superbowl of Sleep.” Thousands of sleep researchers and clinicians from all over the world attended this meeting on June 1-5 in Baltimore, MD. On Wednesday, I participated on a pediatric narcolepsy panel hosted by Dr. Judith Owens with pediatric specialists, other patients…
Read MoreMy Twisted Fairytale: A Poem by Shelby Stein
I feel like a princess locked in a tower. My Narcolepsy is my dragon guard. My weight loss is the lava moat that makes me cower more. My evil witch is merely my medicine, At first we didn’t see the harm, For it had a magic disguise to seem so beautiful. My poison apple of my…
Read MorePresenting the Patient Perspective at Social Media for Pharma Conference
On May 15, 2013, I had the honor of presenting “The Patient Perspective” at the Social Media for Pharma Conference in Princeton, NJ. The conference theme intrigued me, with the many FDA regulations surrounding how pharma companies can interact with patients. I learned a lot and met some awesome innovative thinkers at the conference. I spoke…
Read MoreNarcolepsy & Exercise: Narcolepsy Awareness Video #17
As a person with narcolepsy, a sleep disorder or chronic illness, what’s your take on exercise? Too tired? Crucial to your health? Improve your symptoms? My latest video explores my experience as an athlete with narcolepsy and offers tips for successfully incorporating exercise into your life. Come back for more videos soon! Thank you…
Read MoreTaking on Narcolepsy as a New Mom: Guest Post by Cherae Robinson
REM Runner’s Intro: Meet Cherae – a teen mother, college graduate, medical assistant, 20 year old woman with narcolepsy. Young people with narcolepsy may worry about having children, wondering if they’ll have the energy to care for a child. Fair enough. Yet I’ve met many inspiring parents living with narcolepsy. I’m thrilled to share one amazing story…
Read MoreDebunking the Narcolepsy Myth: Narcolepsy Awareness Video #16
My latest video, “Debunking the Narcolepsy Myth” challenges perceptions of people with narcolepsy falling asleep in the middle of a conversation or while standing and educates about real symptoms. Thanks for watching! Thank you to Alex Withrow for his expert video production. Watch full video series Watch Video #19: Riding the Waves of Narcolepsy –…
Read MoreFree E-Book Giveaway this Mother’s Day Weekend
Download the award-winning Wide Awake and Dreaming: A Memoir of Narcolepsy e-Book for FREE on May 11-12, 2013. My book recently won first place in the San Francisco Book Festival Biography/Autobiography competition. Let’s celebrate with free books! When: Saturday May 11 & Sunday May 12, 2013 (12:00am -11:59pm PST)Where: Amazon.com – download free e-book here.Don’t have a Kindle? No…
Read MoreWide Awake and Dreaming Awarded Winner of San Francisco Book Festival Biography/Autobiography Competition
Wide Awake and Dreaming: A Memoir of Narcolepsy won first prize in the 2013 San Francisco Book Festival Biography/Autobiography competition. My heart raced with joy receiving the news today! Congratulations to Runner-Up (and New York Times Bestseller), Brain on Fire by Susannah Cahalan. I can’t wait to read Ms. Cahalan’s book. Winners will be honored on May 18,…
Read MoreLet Her Sleep…
A welcome reminderTo let go,Let sleep wash in,Knowing I will rise again,and take on the world. All in good time. I discovered this image on Pinterest and had to share! Link to print on Etsy. Xoxo, REM Runner
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