“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!”
From Our Community:
Patient Advocate, Project Sleep
“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.”
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.”
RVN Writing Graduate 2018
“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.”
RVN Speaking Graduate 2017 and Program Mentor
“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!”
Event Participant
“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.”
RVN Speaking Graduate 2017
“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.”
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.”
Board Member, Wake Up Narcolepsy
“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.”
President & CEO, Project Sleep