American Sleep Apnea Association

The American Sleep Apnea Association (ASAA) is a non-profit organization founded in 1990 by persons with sleep apnea and concerned health care providers and researchers.[1]

ASAA Mission

The American Sleep Apnea Association, founded in 1990, is a patient-led, nonprofit organization dedicated to the promotion of sleep health through research, advocacy and education.[2]

The Association uses all communication channels available to raise awareness about sleep apnea, a condition that affects at least 25 million Americans, 85% of which remain undiagnosed and untreated. The ASAA has helped hundreds of thousands of patients through its programs, public awareness campaigns, research and advocacy.

The Association is leading the way in developing patient-centered and patient-led research projects that will bring a better understanding of how sleep apnea is associated with other co-morbid conditions.

ASAA Activities

Sleeptember Sleeptember® is an annual social marketing and public relations effort designed to create fun and engaging online and community events in order to raise awareness of the public health impact of sleep loss, connect the dots between sleep disorders and problems with other comorbid health conditions, raise funds for medical research, advocacy efforts and to change sleep habits for the benefit of the individual, their family and society as a whole. It will also create a community of members of the public, people with common chronic and rare health conditions such as sleep apnea and narcolepsy, non-profit organizations, industry, and federal and state agencies that work together to create a critical mass of attention to how sleep impacts our health, safety, well-being, and productivity. Sleeptember is a patient democracy that incorporates social marketing elements from successful campaigns such as Movember and the ALS Ice Bucket Challenge along with patient engagement principals utilized in research efforts such as the National Patient-Centered Clinical Research Network.

SleepHealth Mobile App Study The SleepHealth app designed for iPhone, iPad Touch and Apple Watch and the patient-driven SleepHealth Mobile Study aims to help identify connections between sleep habits and health outcomes. The SleepHealth study uses the open source ResearchKit framework designed by Apple to enable participants to easily complete tasks and submit surveys right from the SleepHealth app. SleepHealth is the first ResearchKit study to run on the data-rich Watson Health Cloud.

The SleepHealth App integrates the promotion of sleep health into the daily lives of users and allows them to simultaneously participate in medical research, social media, and crowdfunding that focuses on insufficient sleep and alertness and there connection to sleep disorders or other comorbid conditions (e.g., diabetes, heart disease, obesity, stroke, hypertension, atrial fibrillation, COPD, depression, anxiety, etc.). Capturing large amounts of individual health data will allow researchers to work together with individuals to engage in participatory research and work collaboratively in an attempt to begin to change how some research is conducted. The ASAA aims to help lead the transition from “patient-centered” research to “patient-led” research whereby participants help to generate new research topics and types of patient-reported outcomes that they want to see tracked and reported to them through compelling graphic displays. This study is unique in that it is led by patients and allows participants to be equal partners in both the monitoring of their symptoms and management of their symptoms as well as laying the foundation to direct the research process itself in the future through integration with the Sleeptember campaign.

The ASAA provides information on sleep apnea to the public and answers questions about diagnosis and treatment options. The ASAA works with other non-profit organizations and societies of health-care professionals to reach the undiagnosed. In addition, the ASAA serves as an advocate for people with sleep apnea and assists them in living with this disorder and its repercussions. [3]

Sleep Apnea Support Groups

The ASAA provides access to the A.W.A.K.E. Network, a network of support groups for those with sleep apnea. "A.W.A.K.E." is an acronym for "Alert, Well, And Keeping Energetic." Founded in 1988 as a mutual-help support group for persons affected by sleep apnea, the A.W.A.K.E. Network is now composed of more than 300 groups in 47 states. A.W.A.K.E. meetings typically feature guest speakers who address topics such as complying with CPAP therapy, legal issues affecting those with sleep apnea, weight loss, treatment options such as oral appliances, and new research findings. The ASAA also sponsors an online support group as an alternative to the A.W.A.K.E. groups.

Partner Organizations

References

  1. ↑ Wolf-Meyer, Matthew J. (2012). The Slumbering Masses: Sleep, Medicine, and Modern American Life. University of Minnesota Press. pp. 113–114. ISBN 9780816674749.
  2. ↑ http://www.sleepapnea.org
  3. ↑ http://www.sleepapnea.org

Additional References

External links

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