Hello 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…

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Narcolepsy Featured in The Pink Sheet Publication

I’m excited to share, “Narcolepsy Patients Hope FDA Attention Will Spur Drug Research, Shed Misperceptions” by Brenda Sandburg, The Pink Sheet, May 13, 2013. [View/Download PDF] This great article describes narcolepsy’s inclusion in FDA’s Patient Focused Drug Development Iniative. Thank you Ms. Sandburg and the Pink Sheet for featuring narcolepsy in your publication! For more posts about…

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Dr. Mignot Discusses Current State of Narcolepsy Research with NIH’s Dr. Twery

Dr. Michael Twery (Director of the National Center on Sleep Disorders Research at NHLBI) recently discussed narcolepsy research with leading expert, Dr. Mignot (of Stanford University). This video provides a great overview of why narcolepsy develops in certain individuals and the innovative treatments on the horizon for this neurological illness!  Thank you Dr. Twery, Dr. Mignot and NHLBI…

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Ireland’s First Suddenly Sleepy Saturday Narcolepsy Awareness Event: Guest Post by Elaine Butler Armstrong

REM Runner’s Note: Narcolepsy advocate and my dear friend, Elaine Butler Armstrong recently organized Ireland’s First Suddenly Sleepy Saturday Narcolepsy Event! I invited Elaine to share this momentous occassion with us. Elaine’s Guest Blog Post: It’s always a joy to meet up with the members of S.O.U.N.D. (Sufferers Of Unique Narcolepsy Disorder ) and the children…

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Praise for “Wide Awake and Dreaming: A Memoir of Narcolepsy”

So excited to share my very first book review here! Written by the amazing blogger Amanda of “Small Steps: A teenager’s look at living with multiple chronic illnesses including an undiagnosed condition, narcolepsy, cataplexy and gluten and lactose intolerance.”  Thank you so much, Amanda! What the experts are saying about my book: “Julie’s memoir describes with eloquence…

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Macy Gray Raises Narcolepsy Awareness

“Narcolepsy can be really damaging to your quality of life.” – Macy Gray Macy Gray recently spoke about narcolepsy in an in-depth interview with HuffPost Live. Macy stated that a close family member has struggled with narcolepsy for many years. “It’s very debilitating,” explained Macy Gray, a world-famous singer-songwriter, record producer and actress. Our narcolepsy wizard,…

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