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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


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