Julie Flygare

Patient Leader

Julie Flygare, JD, is a leading narcolepsy spokesperson, award-winning author, and blogger diagnosed with narcolepsy with cataplexy in 2007. She received her B.A. from Brown University in 2005 and her J.D. from Boston College Law School in 2009. In 2012, Julie published “Wide Awake and Dreaming: A Memoir of Narcolepsy,” which won First Prize in the San Francisco Book Festival Bio/Autobiography Award 2013. Julie has spoken about narcolepsy to scientific researchers, doctors, nurses, college and medical school students, NIH, FDA and CDC representatives. Her story has been featured by Marie Claire, ABC, NBC, Psychology Today and Discovery Channel. Julie is the creator of the NATIONAL SLEEP WALK and the NARCOLEPSY: NOT ALONE international awareness campaign. Most recently, she unveiled the first-ever Narcolepsy Advocacy Mobile App, available to download for free. Julie currently serves on NIH’s Sleep Disorder Research Advisory Board and lives in Los Angeles, CA.

Nominations

Best in Show: Facebook Best in Show: Twitter Hilarious Health Activist Best in Show: Blog Health Activist Hero Lifetime Achievement Patient Leader Hero

Finalist

Healthcare Collaborator: Patient

Winner

Geek Health Activist

Julie is an amazing advocate. She wrote "Wide Awake and Dreaming" a memoir on her diagnosis and early experiences with Narcolepsy.  — Ilana

Julie is a steady powerhouse of an advocate, fighting tirelessly to increase awareness about Narcolepsy. Narcolepsy is, sadly, a very misunderstood (and misdiagnosed...) disease, and Julie's continual efforts help enhance the understanding of Narcolepsy every single day.  — Alex

Julie is an inspiration to all with Narcolepsy and Sleep Disorders. She was a support to my daughter and answered questions which allowed my daughter find a way to finish college. Her book and videos are something we can share with others to help them understand this problem.  — MARY ANN

Julie's tireless efforts to get narcolepsy included in the FDA patient focused initiative have made an outstanding difference for those of us with narcolepsy. Julie Flygare is an outstanding example of a Health Activist Hero!  — Dietra

Julie is always hard at work advocating for people with narcolepsy. One of her main forums to share information on this condition is Facebook.  — Todd

Her affords as an Activist for Narcolepsy has changed my life and allowed me to fully understand what my condition is.  — J Michael

Julie has narcolepsy with cataplexy and she represents all of those 50,000 who have narcolepsy and the 200,000 that have it and don't know it by speaking up about how dibilitating it is.  — Michele

I am nominating Julie Flygare for her amazing efforts to create awareness of Narcolepsy and Cataplexy and being a narcoleptic herself she is an inspiration to us all.  — Maureen

Julie has done so many things to raise awareness for the Narcolepsy community.  — Carrie

Julie's efforts in raising awareness and gaining support for the narcolepsy community have helped me and thousands of other PWN (Persons With Narcolepsy).  — Julie

Narcolepsy spokesperson, award-winning author and runner living with narcolepsy and cataplexy.

Julie is an amazing advocate for narcolepsy and her work is endless. Her efforts to get narcolepsy included in the FDA patient focused initiative made a huge difference for our community. Her blog is informative and inspirational.  — Nicole

Julie has *literally* put narcolepsy on the map with her "NARCOLEPSY: NOT ALONE" campaign, involving 750+ submissions from a total of 28 countries!  — Tam

She is a great support and activist for the Narcoleptic community.

Julie works hard every day to educate and advocate for those with narcolepsy and cataplexy. She has truly become the national spokesperson for these conditions.  — Mark

She makes a huge difference for the narcolepsy community by raising awareness and meeting with people who can influence a change in how narcolepsy is perceived  — Jacqueline

Julie works tirelessly to speak up on behalf of people with narcolepsy. She is a crusader who educates the public and spreads awareness about a rare, misunderstood condition.  — Jessica

She wrote a book that defines each and everyone of us that share this illness. She has made it possible for me and MANY others to open up and be more public and share stories about our disease! To embrace it and do something positive with it!!!! She is very personable and literally gets on a personal level with her followers!  — Denna

Amazing narcolepsy awareness activist. She has spent tireless efforts in raising awareness and letting people with narcolepsy know they are not alone  — krickett

Julie is a wonderful and tireless advocate for the narcolepsy community. She wrote a book and speaks often on the subject. She did a lot to promote the recent FDA hearings on the subject. She has raised my personal awareness and helped me understand my illness better.  — katherine

Julie has published her very private struggle with Narcolepsy to bring awareness to the condition. She shared it with many for free through Amazon. She had launched the Narcolepsy: Not Alone campaign and been an advocate for all sufferers of Narcolepsy by her participation with the FDA. She is an amazing woman who deserves this award.  — Angela

Narcolepsy is a rare disease which I was diagnosed with in May 2013. Searching for information was difficult, but after I came across Julie Flygare the flood gates opened! Julie has been my gateway to connecting with other people diagnosed with narcolepsy, to becoming involved in advocacy, and to being up to date with the latest developments regarding this disease. She does so much for the narcolepsy community, from education to raising awareness to putting narcolepsy on the map within the medical community. Narcolepsy would not have made the strides that it has is recent years without Julie stepping up to the plate. Julie does all this and more with passion, determination, and a kind heart. She reaches out to people within the narcolepsy community and gets to know them each personally. Her accomplishments rival that of a larger-than-life celebrity activist, yet she is a friend to all. I could never thank her enough for everything that she's done for me and others. Julie Flygare is Narcolepsy's Sweetheart.  — Jennifer

Julie Flygare continues to bravely and intelligently bring awareness to Narcolepsy (N). She is a pioneer in shedding light on a debilitating, lifelong, incurable disorder that is in its infancy in terms of epidemiology, research, and treatment (TX). Her advocacy plays a major role in fast tracking research and TX on a neurological disorder that is largely neglected and/or misunderstood by the medical community. Julie continues to demystify, dignify, and illuminate physical symptoms of N that are often misconstrued, and/or diminished by professionals, family, and friends. Her efforts provide an invaluable resource to help people with N cope and address the challenging social aspects of living with N. People with Narcolepsy need this social support as much, or more than any medical or behavioral intervention. Without reservation, I highly recommend Julie Flygare for the Health Activist Hero Award!!!  — Dr.

A sampling of Julie's countless advocacy achievements- Wide Awake and Dreaming: A Memoir of Narcolepsy.The Jack and Julie Narcolepsy Scholarship, Project Sleep, Sleep Walk, Narcolepsy: Not Alone campaign, Narcolepsy Advocacy Center (mobile app), Honda will create a 30-second Narcolepsy Awareness PSA (Change.org petition to remove an inaccurate ad)  — Nicole

- Julie has raised awareness & research funds through her participation in the Boston Marathon -Her autobiography "Wide Awake and Dreaming" won an award at the San Francisco Book Festival -Her international "Narcolepsy: Not Alone" photo awareness campaign has gained over a thousand participants since its launch. -She is a member of the NIH Sleep Disorders Patient Advisory Board -Her efforts helped procure narcolepsy a slot in the FDA's rare disease initiative giving us patients an opportunity to speak directly to those involved in passing new treatments & research -She has collaborated with doctors & designers to create the 1st narcolepsy info graphic to quickly educate doctors, people on the signs & symptoms. -She travels the country speaking at medical conferences, patient conferences, & smaller fundraising events -Her story has been featured in magazines, on news networks, and is the base of a required seminar taken by all students of Harvard Medical School  — Jessica

Julie is a relentless advocate for narcolepsy awareness, and utilizes Facebook as one of her means of advocacy.  — Todd

For her dedication as an advocate and representative of narcoleptics and for helping to increase awareness of narcolepsy in the world

Julie Flygare

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