Project Sleep Co-Leads World Narcolepsy Day 2020
LOS ANGELES, Sept. 8, 2020 — Project Sleep, a national organization that aims to educate individuals about the importance of sleep health, announced today that it is one of the 26 organizations around the world to co-lead the second annual World Narcolepsy Day on Tuesday, Sept. 22, 2020.
World Narcolepsy Day is a powerful opportunity for the entire community to stand in solidarity and support of one another across all boundaries, continents and time-zones. On this day, patient advocacy organizations, researchers, clinicians, drug developers, local communities and individuals will collectively share knowledge, provide hope and take action to raise awareness for narcolepsy on a global scale.
“Due to low awareness and inaccurate Hollywood portrayals, the majority of people living with narcolepsy today are currently undiagnosed or misdiagnosed with other conditions,” said
Julie Flygare, J.D., President and CEO of Project Sleep. “Without proper diagnosis and medical care from a sleep specialist, narcolepsy symptoms can be misinterpreted as laziness or quirky character flaws, and may severely limit education and employment opportunities. Public education is critical, which is why Project Sleep is proud to co-lead this global awareness movement to reduce delays in diagnosis, reduce stigma and improve outcomes.”
Narcolepsy is a chronic neurological condition that impairs the brain’s ability to regulate the sleep-wake cycle and affects about 1 in 2,000 people, or 3 million people worldwide. Symptoms vary by person and may include sleepiness during the day, sudden episodes of muscle weakness often triggered by emotions (called cataplexy), sleep paralysis and confusing hallucinations around sleep.
“During a challenging year when many people feel isolated including those with narcolepsy, elevating under-represented voices and fostering a sense of connection is more important than ever,” described Flygare. “Project Sleep is thrilled to host a series of online activities, story sharing events and training sessions throughout September to honor and empower our diverse international community.”
On Tuesday, Sept. 22, 2020 at 9 a.m. EDT, Project Sleep will host a featured event, “Narcolepsy Around the World: An International Panel of Experts” with preeminent experts across five continents, including:
- David Cunnington, MD, Melbourne Sleep Disorders Centre, Australia
- Yves Dauvilliers, MD, PhD, University of Montpellier, France
- Yu-shu Huang, MD, Chang Gung Memorial Hospital and University, Taiwan
- Christianne Martins Bahia, MD, Rio de Janeiro State University, Brazil
- Emmanuel Mignot, MD, PhD, Stanford University, USA
- Giuseppe Plazzi, MD, PhD, University of Bologna, Italy
The panel will highlight recent research updates, the impacts of the 2020 global pandemic and any unique barriers faced in treating patients with narcolepsy in their respective countries. To watch this live broadcast, tune in via Project Sleep’s Facebook Page on Tuesday, Sept. 22, 2020, at 9 a.m. EDT: https://www.facebook.com/ProjectSleepAwareness/.
In addition, other patient advocacy organizations will lead various online activities and efforts to advance awareness, education, support, research, and advocacy. Communities and individuals are encouraged to take part in these initiatives and to raise their voices on social media using the hashtag #WorldNarcolepsyDay. The worldwide group of organizations co-leading World Narcolepsy Day 2020 include:
- Asociación de Narcolepsia e Hipersomnias de Argentina
- Asociación Española de Narcolepsia
- Asociación Lionesa de Enfermedades Raras
- Associação Brasileira de Narcolepsia & Hipersonia Idiopática
- Association Française de Narcolepsie-Cataplexie et Hypersomnies Rares
- Associazione Italiana Narcolettici e Ipersonni
- Danish Narcolepsy Association
- FACES of Narcolepsy
- Flemish Federation for Narcolepsy
- Hypersomnia Foundation
- Japan Narcolepsy Association, Naruko-kai
- Narcolepsy Africa Foundation
- Narcolepsy Association Finland
- Narcolepsy Australia
- Narcolepsy Ireland
- Narcolepsy Network
- Narcolepsy UK
- Nederlandse Vereniging Narcolepsie
- Project Sleep
- Swedish Narcolepsy Association
- Swiss Narcolepsy Association
- SOUND Ireland
- Wake Up Narcolepsy
To learn more about narcolepsy and be the first to know about Project Sleep’s World Narcolepsy Day activities, visit our World Narcolepsy Day webpage.
About Project Sleep: Project Sleep is a 501(c)(3) non-profit organization dedicated to raising awareness about sleep health and sleep disorders. The organization’s programming includes the Rising Voices of Narcolepsy℠ leadership training program, the Jack & Julie Narcolepsy Scholarship, the Narcolepsy: Not Alone® campaign, the Sleep In, and advocacy efforts. www.project-sleep.com