Finding a Cure
World Narcolepsy Day 2020 Activities Starting Soon!
World Narcolepsy Day 2020 is quickly approaching on Tuesday, September 22, 2020 and Project Sleep has an exciting schedule of activities planned for September. This is the second annual World Narcolepsy Day aiming to raise awareness of narcolepsy on a global scale. I’m a little excited, can you tell? Project Sleep’s Schedule of Activities While international…
Read MoreOrexin/Hypocretin Agonists are Coming! Part I: Reporting Back from World Sleep 2019
Room 116: A Glimpse of the Future It was a basic, boring conference room, but there was nothing basic or boring about Room 116 at the Vancouver Convention Center on Wednesday, Sept. 25, 2019 at 4:30 p.m. As the final session of the final of five days of the World Sleep Congress including World Narcolepsy Day,…
Read MoreListen Now: New Interview on Wake Up Narcolepsy’s Narcolepsy 360 Podcast
A few months ago, I had the pleasure of sitting down with Claire Crisp, Executive Director of Wake Up Narcolepsy (WUN), to record an interview for WUN’s Narcolepsy 360 podcast. This was a meaningful experience and a lot fun to share this conversation with Claire, who is an amazing leader, advocate and friend in the narcolepsy…
Read MoreOur Time to Shine! Behind-the-Scenes of Project Sleep’s Recent Advocacy Initiative
I was scared. I didn’t know if you’d come with me on this path. We’d JUST finished the incredible record-breaking Sleep In 2019 campaign, with many of you giving time and spoons to support Project Sleep. The very next day, I learned that our advocacy moment had arrived — yay!! But with a really quick turnaround…
Read MoreWATCH NOW: Project Sleep’s FB Live Narcolepsy Video with Dr. Emmanuel Mignot and Watson
Last week, I was thrilled to spend the afternoon with Dr. Emmanuel Mignot and Watson (Dr. Mignot’s chihuahua living with narcolepsy with cataplexy). Together, we recorded Project Sleep’s first Facebook Live video at Stanford Medical School. In this “Ask Us Anything” FB Live video, we fielded a wide variety of questions from the future of…
Read More2018 Exciting Update: Advancing Novel Treatment Options for Narcolepsy
One of my biggest takeaways from the APSS 2018 SLEEP Meeting last month was the great amount of drug development underway for narcolepsy! Below is a list of some of the emerging treatments “abuzz” at #SLEEP2018. These are at various stages in development, and it’s hard to predict how quickly each will advance to (hopefully) gain…
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 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 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 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.…
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