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

We are thrilled to conduct our fourth series of Rising Voices of Narcolepsy trainings online this summer of 2020! All spots in the summer 2020 trainings are full. For interested individuals, we aim to conduct our next series of trainings in the summer of 2021, with the application releasing mid-February 2021. To receive announcements about this and other opportunities to get involved, sign up for e-updates.

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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Live! Story Sharing Series

Starting in January 2020, Project Sleep now produces a monthly Rising Voices of Narcolepsy Story Sharing Series. Each month, viewers gather online to watch a Rising Voices of Narcolepsy trained speaker or writer present their story via Facebook Live. Watch the recorded videos on our Facebook page.

Testimonials

“I knew I wanted to raise awareness but I was having difficulty narrowing down my story. The Rising Voices of Narcolepsy program provided exactly the framework I needed, now my audiences are intrigued and fascinated by my speech. RVN also gave me a platform and  credibility as a speaker and advocate, which makes it easy to book events.”

Shannon Burkoth

RVN Speaking Graduate 2017 and Program Mentor

“I was hesitant to apply for the Rising Voices of Narcolepsy program because public speaking was out of my comfort zone, but I knew I wanted to be a voice for others to spread awareness. After giving four presentations, this experience has been so surreal! I am confident 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

Rising Voices of Narcolepsy Story Sharing Series: Meet Speaker Amy Desmarais

This week, our Rising Voices of Narcolepsy Story Sharing live series continues with a brand-new storyteller: Rising Voices of Narcolepsy trained speaker Amy Desmarais! We are honored and excited to have Amy join us as our first speaker with idiopathic hypersomnia (IH). This Sunday, May 31, Amy will present her story and journey with IH,…

Rising Voices of Narcolepsy Story Sharing Series: Meet Writer Kayla Douglas

This week, our Rising Voices of Narcolepsy Story Sharing live series continued with a brand-new storyteller: Rising Voices of Narcolepsy trained writer Kayla Douglas! On Sunday, May 24, Kayla read Scared of the Dark: The Narcolepsy Symptoms That Nobody Talks About, one of her many writing pieces about or inspired by her experiences living with…

Rising Voices of Narcolepsy Story Sharing Series: Meet Speaker Eilís Finnegan

This week, our Rising Voices of Narcolepsy Story Sharing live series continues with a brand-new storyteller: Rising Voices of Narcolepsy trained speaker Eilís Finnegan! This Sunday, May 17, Eilís will share her journey of receiving her diagnosis as a college sophomore to using her experiences with narcolepsy to influence her thesis project in architecture to finding…

Special Broadcast: Julie Flygare’s Narcolepsy Story & Book Reading Live

On Sunday, May 10th, our Rising Voices of Narcolepsy Story Sharing live series continues with a rare online event and book reading with Project Sleep’s President & CEO, Julie Flygare! In this unique broadcast, Julie will share her journey—from wanting to push narcolepsy out of her life to finding self-acceptance, writing Wide Awake and Dreaming:…
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