Narcolepsy Research
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 MoreNarcolepsy 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…
Read MoreNarcolepsy Awareness Video #15: Narcolepsy Chosen for FDA Initiative
I’m thrilled to release my 15th narcolepsy awareness video providing an update on narcolepsy’s placement in FDA’s Patient Focused Drug Development Initiative (PDFFI). For more posts about the FDA Initiative, click here. Thank you for checking out my video! Big thanks to Alex Withrow for his expert video production. Watch full video series Watch Video #19:…
Read MoreNarcolepsy selected for FDA Patient Focused Drug Development Initiative (PFDDI)
I’m thrilled to announce that NARCOLEPSY has been selected for FDA’s Patient-focused Drug Development Initiative (PFDDI). Narcolepsy has been selected as one of the initial 12 disease areas for individual evaluation to be addressed in FY 2013 – FY 2015. We did it! I testified in person and led the campaign for online comments.…
Read MoreREM Runner’s Top 9 Inspiring Female Health Advocates Part II – The Sleep Team
In honor of Women’s History Month, I am profiling nine female health advocates who inspire me to follow my dreams. These women are trailblazers – leading the way for other women to optimize their health and triumph over adversity. Part I highlighted leaders in Women’s Health issues. Today, I present 3 superstar sleep advocates: 4. Arianna…
Read MoreDr. 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…
Read MorePresenting at the Southern Sleep Society Meeting 2013
On March 10, 2013, I had the honor of giving a presentation at the 35th Annual Meeting of the Southern Sleep Society in Dallas, TX. This is my second year in a row speaking at the SSS Meeting, a large gathering of sleep clinicians, researchers and technicians. The topic of my presentation was “Legal and…
Read MoreJulie Flygare Represents Narcolepsy at FDA
On Wednesday, Feb. 27, 2013, I attended an update meeting on FDA’s Patient Focused Drug Development Initiative. Last fall, I led the campaign urging FDA to include narcolepsy in this 20 disease innovative program (read more here). I testified at the FDA hearing and hundreds of narcolepsy advocates sent in comments of support. FDA received…
Read MoreJulie Flygare Represents Narcolepsy at NIH & NIH’s Funding of Hypocretin Orexin Agonists for Narcolepsy Treatment
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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