Rising Voices of Narcolepsy LogoTo improve public understanding of narcolepsy, Project Sleep’s Rising Voices of Narcolepsy program trains people with narcolepsy to share their stories through public speaking and writing with local communities, healthcare providers, news outlets, blogs and beyond. Combining the power of real-life stories with expert communication strategies, our Rising Voices of Narcolepsy trained speakers and writers are effectively raising awareness and reducing stigma for all those facing narcolepsy.

The Challenge

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 often face stigma and isolation. Likewise, misconceptions and low awareness 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.

Our Mission

Rising Voices of Narcolepsy serves the dual purpose of fostering a new generation of narcolepsy patient-advocates spreading narcolepsy 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.

Get Involved

Project Sleep will host our third RVN training courses during the summer of 2019. The application period is now closed and we can no longer accept applicants for this summer’s trainings.

Request a Speaker or Writer

Request a Rising Voices of Narcolepsy trainee to speak at your event or write for your publication by filling out this form.

NEW! Video Series

While our Rising Voices of Narcolepsy speakers are trained to deliver in-person presentations, this video series brings a few of our speakers’ powerful stories to the comfort of your home to reach more people around the world. Watch and share the full series.

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Testimonials

I knew I wanted to raise awareness and had already tried giving a few speeches on my own. I found it difficult to book any engagements and I was having difficulty narrowing my story down to give an effective presentation. The Rising Voices of Narcolepsy program provided exactly the framework I needed, now I can tell that my audiences are intrigued and fascinated by my speech. RVN also gave me a platform, I can say I’ve completed this leadership training program with Project Sleep, which adds to my credibility as a speaker and advocate and makes it easy to book events.

Shannon Burkoth

RVN Speaking Graduate 2017 and Program Mentor

I was hesitant to apply for the RVN program because I knew speaking in front of people would be a challenge, but I also knew it would help get me out of my comfort zone and that I wanted to be a voice for others like myself to spread awareness. After giving four presentations, all of this is so surreal! I am confident about my presentation and I strongly feel that I am sharing an important message.

Grisel Pantoja

RVN Speaking Graduate 2017

Development

The Rising Voices of Narcolepsy program was co-created by Project Sleep President & CEO, Julie Flygare and health communication specialist Rebecca Fuoco. Project Sleep is extremely grateful to Jazz Pharmaceuticals and Harmony Biosciences for grant funding to help support the program.

Leadership Team

Julie Flygare, J.D.

Julie is the President & CEO 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.

Shannon Burkoth

RVN Program Mentor

Shannon Burkoth is a Rising Voices of Narcolepsy trained speaker and our RVN Program Mentor. She has a background in healthcare and business and lives in Wisconsin with her husband and teenage daughter. She was diagnosed with narcolepsy and cataplexy in 2010.

Rebecca Fuoco, MPH

Rebecca is a health communication 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 and 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.

RVN Latest News

Cataplexy and CounterPlay: Why I Want to Play More

Guest Post by Lisa “So I read this thing about how needing to nap is a lot like needing to fart…” When Julie Flygare shared this brilliant and hilarious comparison at the dinner table, an overwhelming urge hit me. It wasn’t a fart, nor was it sleep – it was cataplexy. My body slumped into…

2019 Rising Voices of Narcolepsy: Now Accepting Applications

Project Sleep is proud to announce that we are now accepting applications for our third series of Rising Voices of Narcolepsy trainings, to take place online this summer of 2019. This leadership training program helps people with narcolepsy effectively share their stories through public speaking or writing with local communities, healthcare providers, news outlets, blogs,…

New! Releasing Rising Voices of Narcolepsy Video Series

Today, Project Sleep is proud to release the Rising Voices of Narcolepsy Video Series —a new library of unforgettable stories and powerful resources you can use to raise critical awareness of narcolepsy. In the coming weeks, we will highlight each of these inspiring individuals via our blog, e-mail and social media. At any time, you can also explore the full video series here. Watch…

Bringing Design Thinking to Narcolepsy

On Saturday, Sept. 15, 2018, Project Sleep hosted “Innovations in Narcolepsy Awareness” as a one-day meeting and interactive workshop at the NonProfit Center in Boston, MA. Over 40 people attended the event, including individuals living with health conditions, loved ones, researchers and healthcare experts. Your Story Matters The day kicked off with introductions and a…
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