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Tuesday, May 29, 2018

Sleep Apnea Patients Seek to Inform and Accelerate Medical Product Development


Contact: Theresa Shumard
Phone: 610-781-1692

Sleep Apnea Patients Seek to Inform and Accelerate Medical Product Development
June 8 meeting will highlight unmet medical needs & treatment expectations from patient point-of-view

Washington, D.C. – May 29, 2018 – People from across the U.S. who are living with sleep apnea will gather in College Park, Maryland, on June 8, 2018 to share what it’s like to live with sleep apnea with FDA regulators, drug and medical device developers, and researchers. This meeting is part of a series started by FDA in 2013 to inform regulatory decision-making. It will feature discussions on the path to diagnosis, impacts on daily living, symptom management, and treatment expectations and adherence.
Hosted by the American Sleep Apnea Association (ASAA), the June 8 meeting caps the AWAKE Sleep Apnea initiative, an education and empowerment initiative launched in April. Participants on-site and viewing via a live webcast will have the opportunity to offer their perspectives through live polling questions and moderated discussion. Dialogue at the meeting will be shaped by interim results of an online Patient & Caregiver survey that has already attracted more than 2,220 responses and remains open for additional responses through June 29, 2018.
Nearly 18 million Americans of all ages have sleep apnea, a disorder that causes people to stop breathing during sleep, sometimes hundreds of times each night. Survey respondents reported high rates of severe to moderate fatigue (80%), daytime sleepiness (77%), and cognitive problems (49%), even among those who faithfully use continuous positive airway pressure devices at night, a centerpiece of sleep apnea treatment. Sleep apnea can have severe health consequences and is linked to increased rates of other serious conditions. In fact, 56% of survey respondents reported having high blood pressure; 28% indicated they have diabetes, and 25% have depression or another mood disorder. Sixty-two percent (62%) expressed that their greatest concern about living with sleep apnea is its long-term impact on their health and lifespan.
Patient panelists include women and men from Los Angeles, Brooklyn, Las Vegas, Colorado Springs, Virginia Beach, Key Biscayne, Portland, Maine, and San Juan, Texas. ASAA’s chief patient officer Adam Amdur will make introductory remarks and board-certified sleep specialist Dr. Shelley Berson will provide an overview of diagnosis and treatment. To close the day, FDA’s Kathryn O’Callaghan, associate director for strategic programs at the Center for Devices and Radiological Health, will summarize the input received from patients and will describe how FDA uses such information in the assessment of benefits and risks, evaluating clinical trial designs, and safety surveillance. View the meeting agenda here. 
A full report on patient perspectives shared at the AWAKE Sleep Apnea Patient-Focused Medical Product Development meeting, including through the live polling questions and Patient & Caregiver Survey, will be submitted to the FDA and released to the public later this summer.
To register for the June 8, 2018 meeting or for more information about the AWAKE Sleep Apnea  

Tuesday, April 24, 2018

You have a special role to play in shaping the future of treatment for sleep apnea.

Today the American Sleep Apnea Association (ASAA) is excited to announce the AWAKE Sleep Apnea initiative, an education and empowerment initiative that includes several opportunities for sleep apnea patients, family members, and caregivers to help inform researchers, regulators, and life science companies about what it’s like to live with sleep apnea. The AWAKE Sleep Apnea initiative is a collaboration of ASAA, numerous organizations, and the U.S. Food & Drug Administration (FDA). It’s the first-of-its-kind campaign to accelerate progress in patient-centered care and treatment of sleep apnea.

In order for it to succeed, we need your help – TODAY!

First, mark your calendar for June 8, 2018. This is the date of the AWAKE Sleep Apnea Patient-Focused Medical Product Development meeting taking place in the Washington, D.C.-area. You can participate in this one-day meeting in person or from the comfort of your home or office via a live webcast. We will be actively engaging patients, family members, caregivers, and advocates in a discussion of the most problematic symptoms, impacts of sleep apnea on daily life, treatment approaches, and what’s missing from care that keeps you from living your fullest. Reserve your seat (in person or by webcast) by registering here. If you’re interested in potentially speaking on a panel at the meeting, please indicate that when prompted in the registration process.

Second, share your perspective via the online AWAKE Sleep Apnea Patient & Caregiver Survey. This 31-question anonymous survey covers six key areas of the patient experience, including diagnosis, symptoms, daily impacts, treatment approaches, and greatest concerns. It takes just 15 minutes or so to complete. Responses collected between now and June 8 will help us refine the discussion on the day of the meeting. Survey results will be included in the final AWAKE Sleep Apnea report published later this summer to capture the voices of patients & caregivers from across the country. The report will be shared with FDA, life science companies, the patient community, and the public. Take the survey now.

Third, participate in a webinar on May 8 to learn more about the AWAKE Sleep Apnea initiative, the June 8 meeting, and the survey. We’ll leave plenty of time to answer your questions. Register here.

Fourth, watch for regular updates about the June 8 meeting and what we’re learning from survey respondents. Keep in touch with new developments via the AWAKE Sleep Apnea websiteASAA’s Facebook page, and Twitter feed. Learn more about our community partners & campaign sponsors, too.

Fifth, help spread the word! Forward this to family members, friends, business associates, and others who share your interest in improving sleep health. Share our posts on social media through your pages and accounts. The more people we reach, the greater our impact will be!

Sleep apnea affects as many as 18 million Americans of all ages, yet there have been relatively few forums for individuals affected by sleep apnea to share their experiences, express their treatment needs, and be heard by individuals directly involved in research, development, and regulation of medical products (including medications, medical devices, and diagnostic tests). By raising your voice through this unique campaign, you will accelerate progress for more and better options to treat sleep apnea.
Join us in support of better treatment and care for sleep apnea by taking action today!

Sincerely yours,
Adam Amdur, Chief Patient Officer
Carl Stepnowsky, PhD, Chief Science Officer
American Sleep Apnea Association
We thank these community partners and sponsors for their support of the AWAKE Sleep Apnea Initiative:

Celiac Disease Foundation:
 CMB Health Solutions
Depression and Bipolar Support Alliance
 Fisher & Paykel
 Jazz Pharmaceuticals
 Medical Device Innovation Consortium
 National Alliance for Caregiving
 Parrish Health Center
 Project Sleep

Friday, November 3, 2017

ASAA announces version 2.1 updates to the SleepHealth Mobile App Research Study

The American Sleep Apnea Association (ASAA) is pleased to announce the upcoming 2.1 version upgrade of its groundbreaking sleep tracking app.

The SleepHealth Mobile App Research Study, first launched in March 2016, released an upgraded version on November 1. 

“This is one of the most exciting studies I have ever been a part of,” says Carl Stepnowsky, the ASAA’s Chief Science Officer, sleep researcher and clinician. “To co-design this study with patients and to be able to ask questions of participants about their nighttime sleep and daytime functioning as they go about their normal daily lives represents two ways we are trying to do research differently!”


Instructions for using the upgraded SleepHealth Mobile App Research Study 

Current users

We appreciate your continued participation in the study! You can read below to learn about all the new changes and improvements coming your way. 
If you are an existing user, you do not need to sign up again. Just click ‘already participating’ and log in with your existing email and password. That's it! 
As always, we appreciate your feedback. And don’t hesitate to reach out to us at if you are having any problems with the app. 

New users

We appreciate your interest in participating in the study!  
To install the new 2.1 version of your app, please navigate to the iTunes App Store using the following link:  
From there, click on the SleepHealth icon to install the latest version. That's it! 
We appreciate your feedback. Please  don’t hesitate to reach out to us at if you are having any problems with the app. 

Unverified new users

Some new users who have installed the previous SleepHealth App may have been unable to verify their accounts. We apologize for the inconvenience, and encourage you to install the latest version of SleepHealth, 2.1, instead.  
You can read below to learn about all the new changes and improvements coming your way. 
To install the latest version of the app, please navigate to the iTunes App Store using the following link: 
From there, click on the SleepHealth icon to install the latest version. That's it! 
If you continue to have problems with your app verification, installation, or usage, please don’t hesitate to reach out to us at We look forward to working together with you to make SleepHealth App even better for the future!

Thursday, October 19, 2017

ASAA Partners with Achievement, Platform for Clinical Recruitment and Healthy Actions

evidation achievement asaa american sleep apnea association

Let's Get Healthy!

In 2017, the American Sleep Apnea Association (ASAA) entered into a valuable new partnership with Achievement, an online platform that rewards users for healthy actions.

One of Achievement's most important functions is to promote clinical research participation opportunities for users.

Earlier this year, they featured ASAA's SleepHealth Mobile App Study, which resulted in 1100 new enrolled participants.

(You can learn more about our successful SleepHealth App here.)

How Achievement directly benefits you, the user

What may be even more interesting to program participants is that Achievement rewards their users—with cash!—for taking healthy actions.

Now you can get paid for your healthy actions. If you're already tracking your sleep activity, you can now get paid to do so.

What is a healthy action? These include participating in clinical studies (like the SleepHealth App) and using connecting apps to track certain information about your day-to-day health, such as sleep quantity and quality.

The Achievement program also rewards participants who track more than just their sleep, such as those who use fitness trackers or who track their heart rate.

If you're a health data buff and use tracking wearables and apps to keep you on track for good health, you will want to participate in this program.

Sign up for Achievement today!

Why? Because the ASAA shares the Achievement platform's mission: to help you improve your health. And because, quite frankly, you get to benefit directly by participating!

To show they are serious about rewarding people for taking their sleep health seriously through healthy actions, the folks at Achievement have decided to make a donation to the ASAA for every person who signs up for their platform!

asaa american sleep apnea association evidation achievement sleep tracking sleephealth app

Check out the details at! 

Please take a moment to sign up at Achievement. It's not only an important research recruitment tool, but a fun and easy way to track and improve your sleep (and wake) health!

Sign up now and Achievement will make a donation to ASAA in your honor. If you aren't already using our SleepHealth Mobile App Study, you can do so, free, here at the iTunes store.

achievement evidation sleephealth app asaa american sleep apnea association cash for healthy actions

Thursday, September 28, 2017

Special notice to SleepHealth App Users: FREE and LIVE webinar on sleep apnea care tonight!

New webinar dial in number

If you want to call in to the webinar, dial 202-602-1295 and enter 960-914-660 for the conference ID.
Otherwise, sign in directly at
Hope to see you there tonight! Bring all your questions! —Your friends at the ASAA and Sleeptember
Fisher & Paykel webinar invite OSA CPAP sleeptember treating sleep apnea
“As a non-profit organization, the American Sleep Apnea Association
does not endorse any hospital, sleep center, company, or products.”

Sunday, September 3, 2017



Don't forget to tag your morning
bedhead selfie with both
#ASAABedhead and #Sleeptember
#Sleeptember is our month-long campaign during September to raise awareness of sleep disorders, to educate people on the importance of sleep and to promote healthy sleep habits.

What can you do to help?

  • Take your bedhead photo and post on your social media using #ASAABedhead and #Sleeptember
  • Tag friends and family and challenge them to do the same
  • Pledge to sleep a little longer during Sleeptember

There will be a prize for the #ASAAbedhead selfie with the most likes... 4 (four) Day-Hopper Passes for Disneyworld valued at $648! 

Please help us spread the word during #Sleeptember. We spend one-third of our lifetime sleeping, let’s make those sleep hours count and connect the dots between healthy sleep and a healthy life.

Wednesday, August 30, 2017

Special Notice to SleepHealth App users: Hurricane Harvey Relief Effort

Current relief effort: Hurricane Harvey, Texas

To our Sleep Health App users:

As you well know, Hurricane Harvey has devastated Houston, TX and its surrounding areas and is currently blazing a new path toward communities to the east in Louisiana. 

The fourth largest US city is home to thousands of CPAP users. The American Sleep Apnea Association (ASAA) is prepared to provide replacement PAP therapy via its CPAP Assistance Program (CAP) to any sleep apnea patients who have lost their equipment in the aftermath of the storm.