Rising Voices of Narcolepsy LogoTo improve public understanding of narcolepsy, Project Sleep is thrilled to launch 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.

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.

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.

Schedule

The first set of training sessions will take place during summer of 2017.

RVN schedule graphic

  • Speaking Session 1: an in-person workshop focused on public speaking in Los Angeles, California on Saturday, May 27th 2017 from 10:00am to 5:00pm with breaks. You will also be required to complete 5-6 hours of pre-workshop homework. NOTE: You will be responsible for their own travel costs.
  • Speaking Session 2: a three-week online course focused on public speaking that will run from June 12th to June 30th 2017. This training will take about 4-5 hours each week on your own schedule to complete (expect a total of 12-15 hours).
  • Writing Session 1: a three-week online course focused on writing that will run from July 10th to July 28th 2017. This training will take about 4-5 hours each week on your own schedule to complete (expect a total of 12-15 hours).
  • Writing Session 2: a three-week online course focused on writing that will run from July 31st to August 18th 2017. This training will take about 4-5 hours each week on your own schedule to complete (expect a total of 12-15 hours).

In addition to training session time commitments listed above, participants will be expected to devote about 20 – 30 hours over the next year to successfully complete the program’s goals and exercises.

The application deadline was February 24th, 2017 and we will be informing applicants of our decision by April 2017. We are evaluating 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.

Development

The Rising Voices of Narcolepsy program is being co-created and led by Project Sleep founder Julie Flygare and health communication 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

 

Julie Flygare, JD

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, MPH

Rebecca Fuoco, M.P.H. 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.

RISING VOICES OF NARCOLEPSY℠ is a service mark of Project Sleep, Inc. All rights reserved.