Adam Amdur is the chief patient officer of the American Sleep Apnea Association and co-principal investigator. He was diagnosed with severe obstructive sleep apnea in 2008, more than thirty years after he first showed symptoms. As the first patient principal investigator and co-founder of the Sleep Apnea Patient-Centered Outcomes Network, a part of the National Patient-Centered Clinical Research Network, Adam worked to bring together patient leaders from other networks in order to discover a common patient voice as it relates to research best practices and collaboration with diverse stakeholders. He has increased awareness through multiple media interviews and has been a lead presenter at the National Institutes of Health’s Precision Medicine Initiative. Adam is also the family member of other patients, including his daughter.
Joseph Borelli Jr., M.D. At 43, Dr. Borelli thought he was losing his mind. He ran two radiological practices that he had founded and was an assistant professor at the Medical University of South Carolina. Yet he began to have trouble recalling friends’ names, forgot to run important errands and got lost driving in his neighborhood. Borelli feared he had a neurodegenerative disease, perhaps early onset Alzheimer’s. He checked in to a sleep clinic for tests, which came out negative. He went to a neurologist, who found nothing wrong. At another sleep clinic, Borelli was diagnosed with borderline sleep apnea and the doctor prescribed a CPAP (continuous positive airway pressure) machine but he still awoke feeling exhausted. He quit using the device after a couple of months. Borelli’s fingers soon grew so clumsy that he couldn’t button his shirt cuffs. He was easily winded, and his heart raced whenever he rose from a chair. He developed chronic anxiety. His marriage fell apart. He contemplated suicide. He then sought out a seasoned sleep physician who instantly diagnosed him with upper-airway resistance syndrome (UARS), a condition in which the airway is partially obstructed during sleep. Unlike full-blown apnea, UARS — which is much harder to detect — restricts breathing rather than stopping it. But both conditions, which prevent a person from sleeping deeply for any length of time, can trigger ailments ranging from cognitive deficits to hypertension. Read about his recovery after proper treatment with CPAP and subsequent invention of the SleepMapper app for Phillips-Respironics in the April 2015 issue of Discover Magazine. Dr. Borelli is a board member of the American Sleep Apnea Association.
Will Headapohl is chairman of the American Sleep Apnea Association and a patient advocate focused on getting all undiagnosed apnea sufferers into treatment and well. He was a founding member of the Steering Committee for the Sleep Apnea Patient-Centered Outcomes Network funded by the National Patient-Centered Clinical Research Network. Will’s resume includes co-author of the book Sleep or Die and numerous senior positions in the information technology field including executive vice president of CNET, chief information officer of Gateway, consultant to Qualcomm, member of the evangelism group at Apple, and establishing cloud-based Internet startups. He is a graduate of Stanford University with a masters and bachelors in Management Sciences and Engineering.
Carl Stepnowsky, PhD is chief science officer of the American Sleep Apnea Association and principal investigator. Carl is a research psychologist who specializes in behavioral sleep medicine. He holds a dual appointment with the Veterans Affairs San Diego Healthcare System as a Health Science Research Specialist and University of California, San Diego. He has been the principal investigator and co-investigator on multiple research grants with funding from the Veteran’s Administration, Agency for Healthcare Research and Quality, National Institutes of Health, and Patient-Centered Outcomes Research Institute. Carl received his undergraduate degree from Brown University and his PhD from UCSD. He is a sleep apnea patient and patient advocate.
Tania Zamora is a Research Program Manager at the VA San Diego Healthcare System. Tania has 12+ years of experience managing multicenter clinical trials, local study sites and research staff. Tania has worked with a diverse interdisciplinary group of investigators over the years on research projects related to sleep apnea, patient self-management, treatment adherence, telehealth, PTSD and Natural Language Processing. Tania has been involved with Dr. Stepnowsky’s research studies since 2006 working closely with Veterans with sleep apnea focusing on patient self-management of OSA and telemonitoring of adherence. She is a graduate of San Diego State University with a degree in Psychology.
Sean Deering is a Research Associate and IT Specialist for the ASAA. He studied Psychology at UCSD and earned his BS with honors in Cognitive Psychology. After graduating, he served as a Research Assistant in Perception and Cognition Lab at UCSD where he worked on multiple electroencephalography (EEG) studies related to attention, perception and cognitive control. He also works as a Research Associate at VA San Diego Healthcare System in Dr. Carl Stepnowsky’s lab where he assists with sleep apnea research studies ranging from monitoring vigilance in OSA patients to using web-based platforms to accelerate recruitment and maximize engagement in sleep research.