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Thursday, October 10, 2019

SURVEY for the Center for Devices and Radiological Health (CDRH) at FDA

Can you help? Please take this 10 minute Survey.

The Center for Devices and Radiological Health (CDRH) at FDA are pleased to collaborate with several patient advocacy organizations such as the American Sleep Apnea Association (ASAA), as a way for patients and caregivers to share their experiences with disease conditions and the use of medical devices for their diagnosis and treatment.  CDRH's ability to evaluate medical devices and monitor their safety is optimized by the valuable feedback and information that patients and caregivers like you can provide, and we appreciate any information that you are willing to share with us.

This pilot survey is being distributed to members of ASAA such as yourself so that you can share your perceptions living with or caring for those with a specific disease, your experience with medical devices, and any related issues that are important to you.  This information will help us to gain a better understanding of the patient and caregiver experience and identify areas of concern.

We thank you for your time in answering our questions. Your responses to this survey will remain anonymous. Once complete, the survey results will be shared with your organization.

Please know that this survey and its individual questions are voluntary and you may leave any questions blank that you don’t wish to answer.

Many thanks in advance for your participation.

Tuesday, September 10, 2019

This year marks our 5th annual Sleeptember, and we are rolling out the biggest event we’ve ever had in the month of September.

Come on the journey this month with

We have launched our new AWAKETOGETHER Survey, following up on topics of interest we discovered through last year’s survey.  We’re taking a deeper dive into patient’s experiences with sleep apnea diagnosis and treatment, symptom improvement, the healthcare system, and more. Raise your voice for better treatment and care by taking this 15-minute survey.
Our AWAKETOGETHER Summit taking place in the Presidio of San Francisco on #91919 is the highlight of this month’s activities.  Join us on Sept 19th, in-person or via webcast, to explore cutting-edge topics in sleep apnea.  To attend in-person or online, please register here.
Our “Portraits of Sleep Apnea” series will continue this year.  In addition to patients like you, we have included the stories of healthcare professionals dedicated to bringing sleep health to the forefront of the conversation. Check out the videos on YT here.
Get the support and help you need… online! The AWAKE Sleep Health Facebook Group  and our Sleep Health Forum are filled with people just like you - looking for help to get the quality sleep we all deserve.  Get active this Sleeptember and reach out to the community for advice or tips.  Or if you’re a seasoned CPAPer, pay it forward by sharing your knowledge.
Our programs and events would not be able to take place without the generosity of our supporters. Click here to make a donation towards the Sleeptember 2019 campaign to keep these community-based initiatives running. 

We can’t wait to see you in Sleeptember – keep an eye out on our social media channels for other events and videos – until then, have a great night’s sleep!


All our webinars are recorded and can be watched anytime

Do you need a CPAP machine?
Learn more about the CPAP assistance Program here.

Mission Statement
The mission of the American Sleep Apnea Association is to improve the lives of sleep apnea patients.

About ASAA
The American Sleep Apnea Association (ASAA) is a patient-led 501(c)(3) nonprofit organization. We are dedicated to improving the lives of those diagnosed with sleep apnea and to advocate for those who are undiagnosed. Our goal is to increase diagnosis, and reduce unnecessary injuries, disabilities, comorbidities and premature deaths associated with this disorder by advancing awareness, education and research.

Tuesday, April 9, 2019

Do you or a friend or family member have COPD and OSA?

Hello Friend of the ASAA,
We know we have asked before - but do you OR a friend or family member have Chronic Obstructive Pulmonary Disorder (COPD) and Obstructive Sleep Apnea (OSA)?  
If you answered ‘yes’ to the question above, we need your help!
The COPD Foundation and American Sleep Apnea Association have launched a successful study to help patients make better use of their therapies, overcome barriers and achieve their health and quality of life goals. This study is proving free education and peer coaching to individuals living with both COPD and OSA, who require the use of CPAP therapy at night. Individuals who also use oxygen with their CPAP therapy at night are also encouraged to sign up. If you have ever been diagnosed with COPD and OSA, join the O2VERLAP Study and reserve your seat in our virtual classroom today. If you have a friend or family member that has both COPD and OSA, please forward this email to them to sign up using the link below.

The initial study results are very encouraging. Many study participants have benefitted from the coaching and education offered as part of this program.

Our enrollment period ends in April - this is your last chance to sign up.
Learn more and get all your questions answered here.

==> Get started now

Study participation in the O2VERLAP Study is mostly online and is completely voluntary. There is no cost to registering and compensation up to $75 may be provided.
Questions? E-mail the study directly at
Thank you for helping to spread the word about the O2VERLAP research study!
Carl Stepnowsky, PhD, Principal Investigator, O2VERLAP Study
Elisha Malanga, Administrative Principal Investigator, O2VERLAP Study

Monday, March 18, 2019

March 20th is Sleep Apnea Awareness Day - Join us on at 7pm EDT Facebook LIVE

Join us on Wednesday March 20th at 7pm EDT

Join Kevin Bradley and our patient panel this Wednesday on Facebook LIVE and talk about the symptoms, signs and journey to getting their sleep apnea diagnosis.

Did you know the ASAA’s recently conducted survey of sleep apnea patients showed:
  • 30% of respondents also reported having GERD – a rate much higher than the estimated U.S. prevalence of 18%. 
  • 45% stated high blood pressure and sleep apnea – higher than the estimated U.S. occurrence of 33%. 
  • 20% reported also having diabetes – more than twice the estimated U.S. prevalence
  • 15% of respondents also reported having major depression – which is more then 2x the U.S. diagnosis
Typical symptoms of sleep apnea include heavy snoring, excessive daytime sleepiness or fatigue, difficulty with concentration or memory, and waking during the night feeling short of breath. Untreated sleep apnea can lead to serious health consequences, but with treatment many people see dramatic improvements to their quality of life. Join us in raising awareness of sleep apnea this Wednesday, March 20th at 7pm EDT on Facebook LIVE.

FREE WEBINARS: All our webinars are recorded and can be watched anytime.

Mission Statement
The American Sleep Apnea Association is dedicated to the promotion of sleep health through research, advocacy and education.

About ASAA
The American Sleep Apnea Association (ASAA) is a patient-led 501(c)(3) nonprofit organization. We are dedicated to improving the lives of those diagnosed with sleep apnea and to advocate for those who are undiagnosed. Our goal is to increase diagnosis and reduce unnecessary injuries, disabilities, comorbidities and premature deaths associated with this disorder by advancing awareness, education and research.

Wednesday, March 13, 2019

Spring Forward into March Madness

By Eugena Brooks
As we applaud the end of winter, we are reminded of some traditional lore, “March comes in like a lion and goes out like a lamb.” One more thing you can also “set your watch by” this month — you lose an hour of sleep for Daylight Savings Time (DST). Since March is such a changeable month in and of itself, you can understand how your body’s internal clock can also unsynchronized synchrony

Clock Changes: Why am I so tired all the time?
Yes, we can see warm spring-like temperatures or late-season snowstorms, and the approaching of spring is like light at the end of, for some people, the dreary, frigid tunnel called winter. While it doesn’t always happen, the weather near the end of March is sometimes milder than when it starts. Primarily, this is due to the beginning of a much-anticipated spring that officially starts with the vernal equinox around the 20th of March.
In 1942 (without a clue as to future ramifications) the Federal mandate for DST was initiated. And so, we began to spring forward into March madness losing an hour of sleep that we would not regain until we fall back during the Autumnal equinox six months later.
Why am I reminding us of this little fact in history? Because we now know you can’t make up lost sleep.
As for people with sleep apnea, DST is a small disaster. While just one hour of lost sleep is hardly the same as sleep deprivation, what’s not considered is the shift of the body’s circadian rhythm. Because our sleep-wake cycles are synchronized with the light-dark cycles of the planet, any shift away from what the body and brain are aligned with is going to be felt for a few days until the rhythms can become realigned.

Everybody sings, “Let the Sunshine In”
The additional exposure to sunlight delays the brain’s production of melatonin, as well. Melatonin is the hormone that promotes sleep, and without it, insomnia can result. It’s no wonder that following the spring time change, moods can run afoul, digestive systems might experience interruptions, and focus and concentration can take a hit. So, the time has come to figure out how to be proactive about making a bad situation better.

If your nightly bedtime schedule is all over the map:
You may wish to rethink those habits entirely. When bedtimes and rise times fluctuate wildly, your habits have likely already reinforced an ongoing pattern of sleep deprivation. Why not use DST as a chance to change that? Start by picking (and sticking to) a regular bedtime and rise time schedule. At the very least, you will eventually reset your rhythms, over time to a steady and regular pattern when you know you will be achieving a proper amount of sleep (at least 7 hours, but ideally, around 8 hours is best, night after night).

For best results in any situation, practice good sleep hygiene
Good sleep hygiene can make your sleeping life a lot easier and healthier. It includes a few simple practices.
  • Keep your room dark, cool, and quiet.
  • Put away all handheld electronic devices an hour before bedtime.
  • Avoid heavy meals at dinnertime and don’t eat right before bed.
  • Late afternoon caffeine and alcohol as a “nightcap” should be avoided, as both compromise one’s ability to fall asleep (caffeine) or to stay asleep (alcohol).
  • Nicotine use can also lead to both problems, so skip the bedtime smoke.
  • Use LED-free nightlights in your bathroom so you can avoid turning on lights in darkness, should you need to use the bathroom in the early hours.

At the end of the day, sleep is important to good health.
For those of us that suffer with sleep apnea good sleep means a healthier more productive life. The more you prioritize sleep as important and necessary to good overall health, the easier it will be to survive the upcoming time change.

Tuesday, October 30, 2018

DBSA Well beyond Blue initiative: Meeting & Survey

Depression is often part of the journey for Sleep Apnea patients, adding even more challenges to a difficult path. The ASAA is partnering with the Depression and Bipolar Support Alliance to help FDA and life science companies understand what’s most important to every person living with depression. Be part of this joint effort by responding to the “Supporting Wellness” survey.

Since going live on August 1, 2018 the survey has received over 4,500 responses to this first-ever peer designed survey that enables respondents to share views on wellness as well as, identify research priorities.

Please register to attend the DBSA-led Patient-Focused Medical Product Development Meeting on November 16, 2018. Our collective voices are needed in-person at this meeting which will be held near the FDA campus in Silver Spring, MDThis meeting will empower people living with depression and/or bipolar to share their personal views on aspects of wellness and name the wellness strategies that work best for them. For those who live farther out, they can participate via live stream.
Please register to attend either in person - or online here.

Wednesday, September 5, 2018

AWAKE Sleep Apnea Initiative Documents Life-altering Impacts of Sleep Apnea and Patients’ Priorities for Treatment

New report describes findings from survey of 5,630 patients and testimony at day-long meeting with FDA
Washington, D.C. – September 5, 2018 – A comprehensive report issued today by the American Sleep Apnea Association (ASAA) details the magnitude of human suffering, barriers to diagnosis and treatment, and unmet needs described by people living with sleep apnea and family caregivers. “Raising Voices for Progress in Treatment and Care” is based on first-person accounts conveyed at the June 8, 2018 AWAKE Sleep Apnea patient-focused medical product development meeting attended by 465 people (in person and by live webcast) and a Patient & Caregiver Survey that attracted responses from 5,630 adults of all ages from around the country. 
“This report, released as part of ASAA’s annual Sleeptember awareness events, is essential reading for anyone dealing with sleep apnea – diagnosed patients, symptomatic individuals and those at risk for the condition, family members, healthcare professionals, drug and device developers, researchers, and regulators. It is the most complete account of sleep apnea from a patient point-of-view in existence,” asserted Adam Amdur, ASAA’s chief patient officer. “The powerful testimonies delivered on June 8 and through the survey illustrate the good, the bad, and the ugly of the patient journey with sleep apnea; these testimonies also chart an advocacy agenda to address our community’s many and varied unmet needs.”
Key findings of the AWAKE Sleep Apnea Initiative, as detailed in the report, include:
·       Patients rated fatigue (80%) and daytime sleepiness (78%) as the top two symptoms with the most severe impact. Ratings by patients adherent to continuous positive airway pressure (CPAP) therapy were higher (fatigue – 81% and daytime sleepiness – 79%) than those not using CPAP (fatigue – 75% and daytime sleepiness – 75%) for these and other symptoms identified as having moderate to severe impact.
·       Barriers to diagnosis include low awareness of the condition among the public and medical professionals, lack of access to specialists and sleep testing centers, misperceptions and stigma related to the condition and its treatment, burdensome testing procedures, and financial constraints. Many participants described being symptomatic for years – or decades – before getting diagnosed.
·       Obstacles to effective therapy include problems associated with diagnosis as well as uncomfortable or inconvenient design of therapeutic devices, side effects and other challenges tolerating treatments, inadequate or punitive insurance coverage policies, misdiagnosis and/or other medical complications.
·       CPAP was the most-cited therapy in response to the open-ended survey question, “What have you found that helps the most,” yet there were many caveats and persistence was required to determine and maintain effective machine settings, find a well-fitting mask and good seal, and to properly clean and maintain equipment. More initial instruction, ongoing support, and better customer service were sought by many CPAP-treated individuals. 
With 5,630 responses, the AWAKE Sleep Apnea survey is the largest undertaken in conjunction with a patient-focused medical product development meeting conducted in collaboration with FDA. ASAA used a combination of traditional and social media channels to attract respondents to the 32-item survey; 12 partnering organizations helped extend outreach. ASAA also partnered with Evidation Health to deploy the survey within Evidation’s consumer health “Achievement” platform. Fifty-six percent (56%) the survey responses came through ASAA and partnering nonprofits and the remainder came through Evidation. In general, respondents via the Achievement platform were younger, less severely affected, less likely to have been diagnosed by a physician, and were using fewer medical treatments. Where significant differences were found between the two cohorts, they are reflected in the report.
The AWAKE Sleep Apnea education and empowerment initiative launched on April 24, 2018 in preparation for the June 8 meeting with FDA officials. It was the first campaign of its kind for sleep apnea. ASAA applied to host the meeting as part of FDA’s expanded patient engagement efforts to help regulators understand what individuals living with various conditions experience, which symptoms present the most difficulty, which treatment benefits matter most, and how they perceive potential risks and harms associated with treatment. The report and survey results will be submitted to FDA’s Patient Experience Resources archive. Additional data analyses will form the basis of manuscripts submitted to peer-reviewed publications.
Nearly 18 million Americans of all ages have sleep apnea, a disorder that causes people to stop breathing during sleep and leads to daytime sleepiness, poor productivity at work or school, and increased risk of accidents on the job and on highways, consequences described in vivid detail in the report. The Centers for Disease Control and Prevention estimates that 50-75 percent of adults with symptoms of sleep apnea have not discussed their concerns with a physician. Left untreated, sleep apnea can have severe health ramifications and is linked to increased rates of high blood pressure, heart attack, stroke, diabetes, and other serious conditions, as meeting and survey participants described.
Founded in 1990, the American Sleep Apnea Association (ASAA) is a patient-led, nonprofit organization dedicated to the promotion of sleep health through research, advocacy, and education. To read the report, visit For more information about Sleeptember awareness activities and other sleep health resources, visit