“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
“Seriously one of the coolest, most rewarding things I’ve ever done. Sharing my story was important to me so no one else goes 20 years without a diagnosis. It was an honor to be with other amazing patient advocates and great researchers. I won’t ever forget this day!”
Thaddeus Bath
Patient Advocate, Project Sleep
Grisel Pantoja
RVN Speaking Graduate 2017
“About 50-70 million Americans live with sleep disorders, but the majority are currently undiagnosed, due, in part, to low awareness even among medical professionals. By teaming up with the Sleep Research Society and other renown sleep-related organizations, Project Sleep is proudly elevating patients’ voices to shed critical light on the serious nature of sleep and sleep disorders, something that might otherwise go overlooked.”
Julie Flygare, JD
President & CEO, Project Sleep
“I valued the space created by this event to have safe conversations with my community. I also enjoyed the storytelling workshop and left feeling inspired! It was literally the first time in eight years that I’ve had an opportunity to be present and get familiar with my own narcolepsy. Thank you for visiting Austin and our Texas community!”
Vanessa
Event Participant
“This was a phenomenal experience. So much warmth and connection in the room. Relishing in the togetherness left my heart feeling so full. Also, I’m so grateful that my husband could attend with me. His perspective on what I go through changed dramatically from this experience.”
Sharon
Event Participant
“I am extremely grateful to have had the opportunity to advocate for sleep research. Every aspect of my daughter’s life has been affected by narcolepsy, like many people with sleep disorders. Advocating to my Members of Congress is a dream that I wouldn’t have thought to dream. Yet a dream realized none the less.”
Tammy Smith
Board Member, Wake Up Narcolepsy
“While sleep and circadian scientists are making incredible breakthroughs to better understand sleep’s vital role, it’s critical that we ensure that these findings reach people and improve lives. Partnering with Project Sleep has helped the Sleep Research Society to take our efforts to the next level and fulfill our goal to enhance medical research and public health activities focused on sleep.”
Patrick Fuller, PhD
Chair of Advocacy Task Force, Sleep Research Society; Associate Professor of Neurology, Harvard Medical School
“The Rising Voices of Narcolepsy program provided foundational storytelling skills, making me a more confident advocate for people with narcolepsy.”
Rachel Miyazaki
RVN Writing Graduate 2018
