Narcolepsy Research
Speaking at the Hypersomnia Conference 2015
I’m thrilled to be a featured speaker at the Hypersomnia Foundation’s Annual Conference on Fri. July 17 – Sat. July 18, 2015 at Emory Conference Center Hotel in Atlanta, GA. Join us: http://bit.ly/2015HSFConference. I will present two sessions, one sharing my inspiring journey from hiding my narcolepsy to becoming a vocal advocate and a second session on communicating about sleepiness.…
Read MoreGuest on HuffPost Live: The Psychological Side of Illness
The psychological side of coping with narcolepsy is sometimes as challenging as the physical. I was thrilled to join HuffPost Live for an important discussion, “How To Manage The Psychological Side Of Illness” on Friday, Nov. 21, 2014. Watch below or here: Host Nancy Redd welcomed an inspiring panel of health advocates including yours truly, Juile Flygare (@REMRunner) Founder…
Read MoreNarcolepsy Finding Retracted but Autoimmune Theory and Epidemiological Association to Influenza/H1N1 Vaccine Remain Strong
Recently, Science reported that Science Translational Medicine (STM), retracted an important study in their December 18, 2013 journal by Dr. Emmanuel Mignot of Stanford that explained the first steps in our understanding of narcolepsy as an autoimmune disorder. In his study, Dr. Mignot had found that T cells were primed to attack hypocretin. Hypocretin are the brain…
Read MoreHarvard Medical School’s New Narcolepsy Website
I’m so thrilled to share Harvard Medical School’s new Narcolepsy Website – a fantastic user-friendly resource for patients and supporters alike. There are videos, PDFs and basic information about narcolepsy symptoms, diagnosis and treatment along with suggestions for living well with narcolepsy – including tips for daily life, school, work and safety. I had the…
Read MoreRaising Narcolepsy Awareness at UCLA Medical School
Last Friday, Jan. 31, I shared my inspirational narcolepsy story at UCLA Medical School. In one hour, we laughed, cried and changed perceptions about narcolepsy in future doctors. The medical students had recently studied narcolepsy in their curriculum – briefly learning the symptoms and watching a few YouTube videos. I was honored to add my patient…
Read MoreNarcolepsy is an Autoimmune Disorder
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…
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 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 MoreResults of the Burden of Narcolepsy Disease (BOND) Study: Guest Post by Dr. Mark Patterson
REM Runner’s Note: I asked my good friend and fellow narcolepsy advocate, Dr. Mark Patterson, to share some important information from the APSS SLEEP 2013 meeting. Thank you so much, Dr. Patterson, for this thoughtful well-written post. Dr. Mark Patterson’s Guest Post: I had the good fortune of attending the 27th Annual Meeting of…
Read MoreJulie Flygare Publishes Huff Post Narcolepsy Article
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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