Project Sleep’s Rising Voices program serves the dual purpose of fostering a new generation of patient-advocates spreading awareness of sleep disorders while empowering participants.
Sleep disorders affect an estimated 1 in 5 people worldwide. However, public understanding of sleep disorders is limited, with media often portraying extreme sleepiness as comical rather than a medical condition. As a result, people with sleep disorders often face stigma and isolation. Likewise, misconceptions and low awareness perpetuate delays in proper detection, diagnosis, and treatment.
At the same time, communicating about sleep disorders can be challenging. Many aspects of living with a sleep disorder are invisible to peers, family, teachers, employers, and even medical professionals.
To improve public understanding of sleep disorders, Project Sleep’s Rising Voices program trains people with narcolepsy, idiopathic hypersomnia, sleep apnea, and other sleep disorders to effectively raise awareness through public speaking. Graduates are equipped to share their stories with healthcare providers, universities, local communities, news outlets, podcasts, blogs and beyond. Rising Voices combines the power of authentic storytelling with expert communication strategies to raise awareness and reduce stigma for all those living with a sleep disorder.
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 sleep disorders, sharing one’s story is a powerful way to find connection, validation, and understanding.
The Rising Voices program was co-created by Project Sleep President & CEO, Julie Flygare and health communication specialist Rebecca Fuoco, MPH. Project Sleep is extremely grateful to Jazz Pharmaceuticals, Harmony Biosciences and Avadel Pharmaceuticals for grant funding to help support the program.
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.
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.
Lauren is Project Sleep’s Programs Manager, a public health educator, and advocate with personal and professional experience with chronic illness and invisible disabilities. She coordinates and facilitates the Rising Voices program. She received her B.A. in sociology from the University of Virginia in 2008, and completed her Master of Public Health with a concentration in health education in 2013. Lauren is driven to serve underrepresented communities, and her previous experience includes work with LGBTQ+ youth and people living with HIV/AIDS. She lives in Central Virginia with her family.
We are fostering a new generation of patient-advocates spreading awareness and reducing stigma.
Our advocates not only gain valuable communication skills but also build confidence as individuals with unique and important stories to share.
This video series brings five of our speakers’ powerful journeys into the comfort of your home, reaching people around the world. Watch and share the full series.
Watch a Rising Voices speaker or writer present their story live, followed by questions from the audience. Watch and share the full series.
“Open and informative. She made a connection between the statistics and her personal life (made it that much more impacting).”
“Informative and captivating…”
“I liked the personal feel to it. It wasn’t a generic presentation overloaded with statistics.”
“Katie’s story is very “real”—not rehearsed, and impactful.”
“The best part was learning what lifestyle for patients with narcolepsy can actually look like.”
“Narcolepsy is more than falling asleep throughout the day. The other symptoms, such as hallucinations, surprised me.”
“I liked the fact that it was presented by someone who has narcolepsy. It made it easier to listen to.”
“It was relatable because it was presented by a former medical school student.”
This leadership program trains people with sleep disorders to effectively raise awareness through public speaking. Graduates are equipped to share their stories with healthcare providers, universities, local communities, news outlets, podcasts, blogs, and beyond. Rising Voices combines the power of authentic storytelling with expert communication strategies to raise awareness and reduce stigma for people with sleep disorders.
The application period for the 2024 Rising Voices training has ended. Applications for the Summer 2025 Rising Voices training will open in February and are due by April 15, 2025. There is a $75 tuition fee to enroll in the program. We welcome all applicants regardless of ability to pay, and a reduced tuition fee is available.
Would you like a Rising Voices trained speaker to present at your event? Our speakers are prepared to deliver a 20-35 minute presentation based their personal story, weaving in key sleep disorder facts. Available in English, Spanish, and French. Please submit a request form, and we will reply within a week.
“The Rising Voices program provided foundational storytelling skills, making me a more confident advocate.”
“I knew I wanted to raise narcolepsy awareness but I was having difficulty narrowing down my story. The Rising Voices program provided exactly the framework I needed; now my audiences are intrigued and fascinated by my speech. Rising Voices also gave me a platform and credibility as a speaker and advocate, which makes it easy to book events.”
