Narcolepsy
Dream Big Concert Benefitting Narcolepsy Awareness: Guest Blog Post by Kevin Gonzales
“I wanted to ensure her that I love her and would support her through anything.” -Kevin Gonzales REM Runner’s Note: This is a story of love. I was thrilled to learn about the Dream Big Concert and even more thrilled to hear Kevin and Megan’s journey toward creating this event. I asked Kevin to write a…
Read MoreSleep Walk Dallas Texas on Saturday March 9, 2013
Alright DALLAS, let’s cowboy up and go sleep walking on Saturday March 9, 2013 at 11:00 a.m (CT). Meet me in the lobby of the Hyatt Regency Dallas Hotel. Together, we will walk from the hotel to Dallas City Hall Plaza and back (about 2 miles total). Please RSVP by sending me a message via my contact…
Read MoreJulie Flygare’s Interview on Sirius XM Radio – Listen Here!
Listen here for my SiriusXM Radio’s Broadminded Show interview. This morning, I arrived at the SiriusXM Radio studios at sun-rise. It was great to see the Broads again, Christine and Molly. We talked about my book, love life, National Sleep Awareness Week and the National Sleep Walk! I hope you enjoy the segment. Thank you for…
Read MoreJulie Flygare Represents Narcolepsy at FDA
On Wednesday, Feb. 27, 2013, I attended an update meeting on FDA’s Patient Focused Drug Development Initiative. Last fall, I led the campaign urging FDA to include narcolepsy in this 20 disease innovative program (read more here). I testified at the FDA hearing and hundreds of narcolepsy advocates sent in comments of support. FDA received…
Read MoreJulie Flygare Represents Narcolepsy at NIH & NIH’s Funding of Hypocretin Orexin Agonists for Narcolepsy Treatment
The 36th meeting of the Sleep Disorder Research Advisory Board (SDRAB) took place on Feb. 25 – 26, 2013 on the National Institutes of Health (NIH) Campus in Bethesda, MD. The current Board is comprised of five sleep researchers and four patient representatives, including yours truly, the REM Runner! Ad-hoc participants include Michael Twery, Ph.D.,…
Read MoreNational Sleep Walk 2013 Rallies East Coast Sleep Community And Inspires Walks Across the Nation
My favorite time of the year is quickly approaching – Sleep Walk time!! Over 120 participants are registered for the National Sleep Walk in Washington DC on Sunday March 3, 2013 at 10:00 a.m. Participants will meet at the Lincoln Memorial Reflecting Pool Steps to raise awareness about sleep disorders and healthy sleep for all…
Read MoreThings I Love: PWNY Beads Dreamy Designs
“Passionate people embrace what they love and never let it go. Those who say it cannot be done should not interrupt those of us who are doing it.” -Julie Ann Funk, PWNY Beads Owner, Maker, Designer Chronic illness can be ugly. So when I discovered PWNY Beads jewelry & replacement Medical ID bracelets, I smiled long…
Read MoreBeing Your Own Health Advocate: Julie Flygare Narcolepsy Awareness Video 11
In this video, I reflect on coming to terms with daytime sleepiness and learning to speak up to my doctor. When symptoms and side effects are invisible, it’s crucial to communicate effectively with health professionals. Watch below or on YouTube. Thank you for watching and come back for more videos soon. A big thank you…
Read MoreFree Valentine’s Day Book Promotions
This Valentine’s Day, fall in love with my book for FREE! Two Exciting Giveaways: Free E-Book Download Day: on Feb. 14, 2013, the Kindle version will be FREE to download on Amazon.com here (from 12:00 a.m. PST 2/14/13 – 11:59 p.m. PST 2/14/13). Don’t have a Kindle? Free Kindle apps for phones, computers, and tablets. Signed Book Giveaway: On…
Read MoreNarcolepsy in the Classroom – Web Broadcast Event
Families of children and teens with narcolepsy are invited to attend this special event on Saturday February 9th from 2-4 p.m. (EST) at Children’s National Medical Center in Washington D.C. LIVE INTERNATIONAL BROADCAST: You are invited to participate in a live internet broadcast as experts speak on “Narcolepsy in the Classroom” on Saturday Feb 9, 2013 from…
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