Narcolepsy Advocacy

Narcolepsy ePatient Medicine X Julie Flygare Video

I’m thrilled to share my 5-minute Ignite! Talk from Stanford Medicine X 2015. Please share with friends and family to raise narcolepsy awareness (https://youtu.be/MXTd8xd_f8s). In this video, I describe my journey with narcolepsy from people laughing in my face to living proudly and creating the NARCOLEPSY: NOT ALONE campaign. I emphasize how feeling “misunderstood and alone” with […]

{ 3 comments }

Viral Narcolepsy with Cataplexy Video

by julie on October 22, 2014

narcolepsy cataplexy

A video of a young woman with narcolepsy and cataplexy has gone viral. Watch below or on YouTube. This is a powerful video and I am grateful to Sarah Elizabeth for bravely sharing her experience! Sarah Elizabeth is primarily experiencing a narcolepsy symptom called cataplexy here. Cataplexy is a sudden loss of muscle tone, resulting in […]

{ 4 comments }

Speaking 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 […]

{ 0 comments }

narcolepsy infographic square preview

I’m so excited to release my narcolepsy infographic! This is the FIRST infographic dedicated to raising awareness about narcolepsy. Please share! Unveiling Narcolepsy Infographic Video: Narcolepsy Infographic: DOWNLOAD FILE Thank you to my amazing graphic designer, Anthony Nesossis.  Thank you to Alex Withrow for his pro video production!  Read about the making of the infographic here. […]

{ 33 comments }

SLEEP 2013 meeting baltimore narcolepsy blog julie flygare 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 […]

{ 4 comments }

Representing People with Narcolepsy at the FDA

by julie on October 26, 2012

Julie Flygare Narcolepsy FDA Meeting

Yesterday, I had the extraordinary honor of visiting the Food and Drug Administration (FDA) to urge them to include Narcolepsy in the ground-breaking Patient-Focused Drug Development initiative.  I was #19 to sign up on the disease nomination speaker list, even though I arrived 15 minutes before registration technically opened. The large conference room quickly filled […]

{ 18 comments }

fda logo

The Food and Drug Administration (FDA) has nominated “narcolepsy” for a groundbreaking new patient-focused drug development initiative. Only 20 diseases will be chosen. Please join me in urging the FDA to select “narcolepsy” for this important effort.  About the FDA Initiative:”Narcolepsy” is one of 39 disease areas nominated for a new FDA initiative to better inform the FDA’s drug and […]

{ 21 comments }

julie-flygare-narcolepsy-blog-interview-siren-interactive-blog

Last week, Siren Interactive invited a few rare disease patient leaders to attend the Rare Disease and Orphan Drug Leadership Congress in Philadelphia. Siren facilitated conversations around the topic of how biopharmaceutical companies can and should engage with patients.  In this great blog post, Siren features videos of our experiences and our paths to becoming […]

{ 0 comments }

Congressional_Briefing_Sleep_Research_Narcolepsy_Julie_Flygare

Room S115 of the U.S. Capitol quickly filled to capacity on Thursday May 31st at 2pm. It was a packed house with standing room only for the Congressional Briefing on the NIH Sleep Disorders Research Plan. Congressional staffers, patient advocates and sleep researchers were all in attendance.  The prestigous presenters outlined the significant health and […]

{ 3 comments }