From competing as an elite athlete to becoming Executive Director of Uplifting Athletes, Rob Long has had an incredible journey, granting him insight into rare diseases and their treatments. As captain for the Syracuse University football team, it looked like
Circadian Sleep Disorders Network (CSDN) is an independent nonprofit organization dedicated to improving the lives of people with chronic circadian sleep rhythm disorders. Circadian sleep disorders are neurological disorders in which the sleep-wake cycle is out of sync with the
Founded in 2021, Sleep Consortium is a nonprofit organization created to accelerate next-generation research, disease understanding, and therapy development for those living with central disorders of hypersomnolence (CDoH) and other related sleep disorders. These disorders of hypersomnolence include narcolepsy, idiopathic
The Restless Legs Syndrome Foundation is a nonprofit 501(c)(3) organization dedicated to improving the lives of men, women, and children who live with this often-devastating disease. The organization’s goals are to increase awareness, improve treatments, and through research, find a
Founded in 2008, Wake Up Narcolepsy, Inc. (WUN) is a nonprofit, patient advocacy organization dedicated to driving narcolepsy awareness, education, and research towards improved treatments and a cure. Executive Director, Claire Crisp, explains, “Narcolepsy remains an under-recognized, under-reported, and
Founded in 2013, Project Sleep is a nonprofit organization that aims to bridge the gap between sleep health and sleep disorders while bringing a patient-driven focus to the sleep space. Julie Flygare, President and CEO of Project Sleep, states that
Patient Organization Highlight The Hypersomnia Foundation, Inc. is a nonprofit, patient advocacy organization working on behalf of people with idiopathic hypersomnia and related rare sleep disorders. Diane Powell, the current Chair of the Board of Directors and CEO, explains, “Idiopathic
PATIENT ORGANIZATION HIGHLIGHT DAY4NAPS is a digital database for narcolepsy awareness events occurring on a global scale. Mark Patterson, MD, PhD, President of the organization, adds, “We also provide links to international narcolepsy and sleep organizations, serving to act as
Alliance of Sleep Apnea Partners ASAP is an organization for patients with sleep apnea created by patients with sleep apnea. Kathy Page, Past President of the ASAP Board of Directors explains, “Everything we do, everything we create or try to
The Snooze Button—That’s the name of the podcast, the working title of the book and various other projects connected to the book. The man behind the button is Neil Hedley. Hedley explains, “I’m the host, producer, webmaster, social media guy,