Communicating Narcolepsy
“Ask Us Anything!” with Dr. Mignot, Julie Flygare and Watson
Friends! I’m super excited to share that on Tuesday, Sept. 4, at 7 p.m. ET, Project Sleep will host a very special “Ask Us Anything” Facebook Live event, featuring myself along with Emmanuel Mignot, M.D. Ph.D., Director of the Stanford Center for Sleep Sciences and Medicine, and Watson, a chihuahua with narcolepsy. We will answer as many of your…
Read MoreUpcoming Webinar: Translating the Patient Story into Action
Friends, I’m so honored to be a speaker on an upcoming webinar, “Translating the Patient Story into Action” taking place on Wednesday, August 22nd at 2:00 p.m. ET. Please register today to save your spot! This event is hosted by the Society for Participatory Medicine, one of my very favorite organizations ever. The Society for Participatory Medicine…
Read MoreWATCH NOW: Is it Narcoleptics or People with Narcolepsy?
I’m so excited to release the video above. It’s an important topic I’ve been meaning to address for a while. This video is important for media representatives covering narcolepsy in the news, researchers, clinicians, drug developers, and last but not least, people with narcolepsy and their loved one aiming to raise awareness and reduce stigma for narcolepsy.…
Read MoreAn Unforgettable Trip to Sweden to Speak about Narcolepsy
I recently returned from Sweden, where I was honored to be the keynote speaker at a narcolepsy event hosted by Narkolepsi Föreningen, an association for people affected by narcolepsy due to the Pandemrix vaccine against swine flu in 2009-2010 and their relatives. The retreat took place on May 11-13, 2018, but I traveled to Sweden a week early…
Read MoreUpcoming Narcolepsy Speaking Engagements: New York, Colorado and via Webcast!
I’m thrilled to share some upcoming opportunities to hear me speak this April! Saturday, April 7th at 2:00 p.m. EDT: Webcast with Avadel Pharmaceuticals I’ll give a new 15-minute presentation on “Living Well with Narcolepsy.” Other experts will share about FT 218, once-nightly sodium oxybate, and the ongoing REST-ON Phase III clinical study. Clinical trials are…
Read MoreYou’re Invited! Sharing My Inspiring Narcolepsy Presentation in Colorado
On Monday, April 9, 2018 from 5:30 PM to 7:30 PM (MDT), please join me at Children’s Hospital Colorado in Aurora, CO to hear my inspiring personal journey with narcolepsy presentation. People with sleep disorders, parents, siblings, spouses, friends, healthcare providers, educators, are ALL WELCOME, but please RSVP: https://www.eventbrite.com/e/family-narcolepsy-support-group-featuring-guest-speaker-julie-flygare-jd-tickets-42799959832 Hope to see you there and…
Read MoreRising Voices of Narcolepsy 2018 Program is Now Accepting Applications!
“There are two ways we can increase the public’s understanding of narcolepsy — we can push information out or we can pull them in with our stories.” -Rising Voices of Narcolepsy Workbook People ask me: “How do I get started sharing my story?” Project Sleep’s Rising Voices of Narcolepsy program is my answer, it is leadership…
Read MoreSpeaking at the Sweet Dreams and Nightmares Sleep Symposium in Tallahassee
Last month, I had the honor of giving two presentations to allied health care professionals including physicians, nurse practitioners, respiratory therapists, social work experts, and sleep technologists at the Sweet Dreams & Nightmares Sleep Symposium presented by Tallahassee Memorial Healthcare and the Florida Medical Association. With the west coast to east coast time change, the…
Read MoreToday: Please Ask Your Representative to Co-Sign Narcolepsy Research Letter
Hi friends! I’m so excited to share an amazing opportunity to support critical narcolepsy research THIS WEEK! My Representative, Congressman Schiff of California, is preparing to send a letter to NIH inquiring on the current size, scope, and direction of the narcolepsy portfolio (See Letters). This letter will encourage NIH to support the full spectrum of narcolepsy…
Read MoreJumping Into a New Chapter of My Journey
Hi friends! I’m so beyond excited to share that as of February 12, 2018, I made a huge career change and took on a new role as President & Chief Executive Officer (CEO) of Project Sleep! Read the full announcement here. Wait, what’s the difference? Some people have said they thought I was already serving in this…
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