Narcolepsy Research
Narcolepsy Research Update 2012
Neurology Today features a great article highlighting narcolepsy research developments with leading researcher Dr. Thomas Scammell (of Harvard Medical School and Beth Isreal Deaconess). Dr. Scammell’s dedication to narcolepsy research is inspiring. During our presentations together at Harvard Medical School, his eyes light up when he describes the advancements made and challenges remaining towards unraveling…
Read More“Sleepwalk With Me” Movie Raises Awareness about Sleep Disorders
“Sleepwalk With Me” is a must-see movie for everyone, especially the 40 million Americans challenged by sleep. The film features a struggling comedian, who is driving cross-country for low-end gigs, while managing a rocky relationship and odd incidents of acting out his dreams at night. I’m a big fan of Mike Birbiglia, the writer, director, and star…
Read MoreSleep’s Choice: Living with Narcolepsy’s Excessive Daytime Sleepiness
Every day, at least once, but usually twice, my head gets heavy, as if a weight sits on my skull, and I know, right then, that sleep is coming. If I don’t put my head down immediately, the heaviness only gets heavier. My joints begin to ache and a wave of nausea comes over me.…
Read MoreDon’t Mess With My Sleep: Makenna’s Walk for Narcolepsy Research
At age five, Makenna was a healthy bright child in Kindergarten, with a great sense of humor and a charming magnetic personality. Under the Weather:In February 2011, Makenna came down with pneumonia. She was very sick and admitted to the Children’s Hospital for IV Antibiotics. She recovered from the infection, but never got her strength…
Read MoreJulie Flygare Speaks On Rare Disease Patient Advocate Panel
[Photo: Julie with Dominique Friend, Sickle Cell Disease Advocate] This Wednesday, I had the honor of speaking on the Patient Advocate Panel at the “InnovationPharm Event” hosted by Siren Interactive, in conjunction with the 7th Annual Rare Disease and Orphan Drug Leadership Congress in Philadelphia, PA. The round-table discussion over dinner focused on how pharmaceutical companies can…
Read MoreREM Runner Attends SLEEP 2012 Conference
I had the honor of attending SLEEP 2012 in Boston, MA last week. This conference brought together sleep doctors and researchers from around the world. I volunteered at Wake Up Narcolepsy’s exhibition hall booth. It was great to see familiar faces and meet many new people. Narcolepsy was very well represented at SLEEP 2012 with…
Read MoreShining Light on Sleep: Julie Flygare Represents Narcolepsy at Congressional Briefing
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…
Read MoreJulie Flygare Gives Keynote Presentation to Southern Sleep Society
This spring, I was so honored to give the Keynote Presentation at the Southern Sleep Society’s 34th Annual Meeting’s Founders Awards Banquet in San Destin, FL. The Southern Sleep Society is the oldest regional sleep society in America. Their 34th Annual Meeting attracted over two hundred participants including sleep doctors, researchers and technicians. As a…
Read MoreSleep: A Health Imperative. Congressional Briefing on the 2011 NIH Sleep Disorders Research Plan
On May 31, 2012, a Congressional Briefing of the 2011 NIH Sleep Disorders Research Plan will take place at 2 p.m. in the U.S. Capitol Building. The Sleep Research Society in conjunction with Congressman Michael Honda organized this event. The Congressional Briefing is open to the public. Patients and interested parties are encouraged to attend. Details below. The…
Read MoreJulie Flygare Presents about Narcolepsy at Harvard Medical School
Last night, I practically skipped up the white marble stairs to Harvard Medical School. My neurologist met me inside one of the fancy marble buildings. We said hello quickly and ducked into the classroom. I recognized this classroom. I’d presented here four years ago with my neurologist. At the time, I was less than…
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