Reporting Back from the International Symposium on Narcolepsy

This past week, I was honored to represent Project Sleep at the 7th International Symposium on Narcolepsy from Sept 9 – 13, 2018 in Beverly, MA. At this meeting, leading narcolepsy researchers and clinicians from around the world came together to discuss developments in the clinical features of narcolepsy, promising treatment advances, and the underlying neurobiology…

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Narcolepsy Meets Design Thinking – Join Me for Unique Boston Event

Please join Project Sleep in Boston for “Innovations in Narcolepsy Awareness” on Saturday, Sept. 15, from 10 a.m. – 4 p.m. at the NonProfit Center (89 South Street, Boston, MA – one block from South Station). This one-day meeting and interactive workshop will empower and educate advocates while also advancing novel approaches to educating the public…

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“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…

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Upcoming 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…

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You’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…

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Rising 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…

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Taiwan 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…

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New 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…

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Today: 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…

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