YOUR STORY MATTERS: Introducing Rising Voices of Narcolepsy ℠

by julie on August 3, 2016

rising-voices-colourThis month, Project Sleep announced Rising Voices of Narcolepsy , a leadership training program to help people with narcolepsy effectively share their stories through public speaking and writing with local communities, healthcare providers, news outlets, blogs and beyond.

On a personal note, this is a huge dream come true for me. It’s such a joy to use my seven years of experience as a vocal narcolepsy patient advocate to help others raise their voices and be heard. Also, I get to work with the most amazing program co-leader, health communication specialist, Rebecca Fuoco. Also, special thanks to Coby McDougall for the inspiring logo and Ciro Di Ruocco for creative direction. Project Sleep’s “dream team” has been working behind-the-scenes for over a year and a half, so finally sharing with you here on my blog is an exciting moment!

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Rebecca and I preparing Rising Voices of Narcolepsy

Why Rising Voices of Narcolepsy?

Narcolepsy is a chronic neurological disorder of the sleep-wake cycle that affects about three million people worldwide. However, public understanding of narcolepsy is limited, with media portrayals associating narcolepsy with comical sleepiness rather than a medical condition. As a result, people with narcolepsy (PWN) often face stigma and isolation as they are mislabeled as antisocial, faking and unmotivated. Misconceptions and low awareness of narcolepsy also perpetuate delays in proper detection and diagnosis.

At the same time, communicating about narcolepsy can be challenging. Many aspects of living with narcolepsy are invisible to peers, family, teachers and even medical professionals. The Rising Voices of Narcolepsy program aims to address this unmet need in the narcolepsy community.

The Mission

This program will serve the dual purpose of fostering a new generation of narcolepsy patient-advocates spreading awareness while also empowering participants. Personal stories of health and illness are invaluable public education tools. Audiences are much more likely to empathize and retain information when it is delivered by someone with lived experience, giving a real “face” to medical terminology and statistics. Moreover, for those with “invisible illnesses” like narcolepsy, sharing one’s story is a powerful way to find connection, validation and understanding. Participants will not only gain valuable communication skills, but will also build confidence in their unique and important stories.

Get Involved

The first set of training sessions, with both online and in-person options, are planned for the summer of 2017. Applications will be accepted in spring 2017. To be considered for the program, applicants must be age 18 or older and diagnosed with narcolepsy. We will evaluate qualified applicants based on enthusiasm and capability and aim to have a diverse set of participants that represents a wide range of demographics and backgrounds. Selected participants will be able to choose a public speaking track or a writing track. If you would like to be notified when more information is available, please fill out the interest form.

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Development

The Rising Voices of Narcolepsy program is being co-created and led by Project Sleep founder Julie Flygare and health communications specialist Rebecca Fuoco. Project Sleep is deeply grateful to Jazz Pharmaceuticals for a generous grant to help support the development of this new program.  Through the Rising Voices of Narcolepsy, Project Sleep aims to combine the power of real-life stories with expert communication strategies to raise awareness and reduce stigmas for all those facing narcolepsy.

Leadership Team

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Julie Flygare, JD

Rebecca Fuoco, MPH

Julie Flygare, J.D. is the founder of Project Sleep, a narcolepsy spokesperson, award-winning author and runner diagnosed with narcolepsy with cataplexy in 2007. Julie received her B.A. from Brown University in 2005 and her J.D. from Boston College Law School in 2009. In 2013, her book, “Wide Awake and Dreaming: A Memoir of Narcolepsy,” won the First Prize Biography/Autobiography Award at the San Francisco Book Festival. Her story has been featured by Marie Claire, ABC, CBS, NBC, Sirius XM Radio, Psychology Today, Huffington Post and Discovery Channel. Julie speaks about narcolepsy around the world to researchers, doctors, nurses, college and medical school students. She is the creator of the international NARCOLEPSY: NOT ALONE campaign and the co-founder of the first-ever national scholarship for students with narcolepsy, the Jack & Julie Narcolepsy Scholarship. In addition to running Project Sleep (her dream job), she lives and works full-time in Los Angeles. Rebecca Fuoco, M.P.H. is a health communications consultant who works to bridge the gaps between researchers, patients, physicians, policymakers and the media. She received a B.S. in environmental and biological sciences from Cornell University, graduating Magna Cum Laude with Distinction in Research. She then transitioned into the policy, communications and advocacy side of science when she obtained a Master of Public Health degree from U.C. Berkeley. While in graduate school, Rebecca was awarded the Center for Health Leadership Fellowship in which she completed an intensive 18-month leadership development program. Leveraging this background, she has written op-eds (published in outlets like The Huffington Post, The Hill and The Oakland Tribune) as well as press releases, grant proposals, and educational materials for many nonprofit organizations, academic research centers, and companies in the health sector. She was diagnosed with narcolepsy without cataplexy in 2014.

Interested in learning more? Fill out the interest form. Thank you for your support!

{ 1 comment… read it below or add one }

Rebecca August 3, 2016 at 4:31 pm

Hi Julie! Any interest in including folks that are diagnosed with IH that manifests closer to narcolepsy in this? I fall in that boat (pre-MSLT diagnosis was narcolepsy), and tend to identify more with PWN than PWIH in my symptoms. I’d love to get involved, but as I read this I’m limited by my diagnosis. Thanks!

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