Narcolepsy Treatment
2018 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 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 MoreThe One Person You MUST Get on Your Team
I wish I had a magic potion to get everyone to understand narcolepsy. In my experience, a few friends and loved ones will understand right away, others may take their sweet time, and some will never get it. However, there is one person that you MUST get on your side: YO’SELF! It’s so cheesy and cliché,…
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 MoreTaiwan Joins Narcolepsy: Not Alone campaign!!
Over the winter holidays, I was thrilled to visit Taiwan and meet with a leading Taiwanese narcolepsy researcher and clinician, Dr. Yu-Shu Huang. I was in Taiwan for an amazing ten-day vacation with my brother, sister-in-law and niece. After a long sleepless journey to Taiwan, I was so glad that we arrived in Taipei at their nighttime, so…
Read MoreNew Research for Breastfeeding Mothers with Narcolepsy
Guest Contributors: Emily Barker, Ph.D. and Katherine Sharkey, M.D., Ph.D. New research published in the journal Sleep Medicine suggests that lactating women who take Xyrem (sodium oxybate) to treat narcolepsy with cataplexy can time their breastfeeding to avoid exposing nursing infants to elevated levels of the drug in milk (Barker et al., 2017). Data from…
Read MoreThe Daze Before the Dream
This isn’t your average nap. Living with narcolepsy, my brain demands to go into R.E.M./dream sleep during the day. Pressure builds and I know it’s THAT time for my brain to do its thing. I get up from my cubicle & head out to my car, hoping not to run into anyone I know along…
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