Science of Narcolepsy

Narcolepsy is an Autoimmune Disorder

by julie on December 22, 2013

IMPORTANT UPDATE: Narcolepsy Finding Retracted but Autoimmune Theory and Epidemiological Association to Influenza/H1N1 Vaccine Remain Strong A recent study confirms that narcolepsy is an autoimmune disorder. Dr. Elizabeth Mellins and Dr. Emmanuel Mignot of Stanford University’s Center for Narcolepsy have discovered a specific group of  “CD4+ T Cells” that target hypocretin and are only found […]

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This Sunday, Sept. 29, 2013 at 6:00 p.m. (BST), I will be speaking about narcolepsy on BBC Radio Cambridgeshire’s program, The Naked Scientists.  This show, “WAKE UP – The Science of Sleep,” is a fascinating discussion about sleep!  LISTEN NOW: http://www.thenakedscientists.com/HTML/content/interviews/interview/1000425/

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Random Remmie Explains Narcolepsy & Sleep Cycle

by julie on September 19, 2013

“Narcolepsy explained so simply a caveman could understand it.”   You may remember Random Remmie from this previous post, but recently she’s became a movie star, featured in two amazing educaitonal videos. The purpose of these videos is to explain narcolepsy to classmates of children with narcolepsy so they can better understand. Please take a […]

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Check out my Huff Post article, “Stanford’s Research Provides Hope for Patients With Narcolepsy.”  This is a dream come true for me! Arianna Huffington’s commitment to sleep is a huge inspiration to me. Thank you to the Stanford Sleep Blog for sharing my story. 

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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 […]

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Hello from SLEEP 2013!

by julie on June 8, 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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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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The 36th meeting of the Sleep Disorder Research Advisory Board (SDRAB) took place on Feb. 25 – 26, 2013 on the National Institutes of Health (NIH) Campus in Bethesda, MD. The current Board is comprised of five sleep researchers and four patient representatives, including yours truly, the REM Runner! Ad-hoc participants include Michael Twery, Ph.D., […]

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Discovery Channel Narcolepsy Video

by julie on December 9, 2012

Here’s the video from the Discovery Channel’s recent Narcolepsy Program (my spotlight begins just after 16 minutes). I especially enjoyed Dr. Joseph Lieberman’s insight and the other patient, Kelly’s story.  Narcolepsy: New Strategies for Diagnosis and Treatment will air on the Discovery Channel again on Saturday, Dec. 22, 2012 at 8 a.m. Download the podcast and […]

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This Saturday, December 8, 2012 at 8 a.m. (EST) – Discovery Channel airs Narcolepsy: New Strategies for Diagnosis and Treatment, featuring my story, along with a panel of experts and a second patient perspective. The program will air a second time on Saturday, Dec. 22, 2012 at 8 a.m. (EST).  It was an honor to work […]

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