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It’s January and the start of a new year. The ASAA has been taking stock of what we’ve accomplished in
2018 was a year of programmatic growth for the ASAA. We added 11 new A.W.A.K.E. peer support groups; we conducted our largest ever patient and caregiver survey with 5,630 respondents; we refined our social media strategy to emphasize patient input and feedback; and we grew our CPAP Assistance Program (CAP) to help more people afford treatment.
Sharing Stories: One of the accomplishments we’re most proud of is the degree to which we helped patients share their sleep apnea journeys with our community and the public. Our June 8, 2018 AWAKE Sleep Apnea conference featured 10 patient panelists, who told their sleep apnea autobiographies to an audience of almost 500 people. Many of you shared your own stories through our patient and caregiver survey (thank you!), which generated an 88-page report that will shape our outreach, education, and advocacy efforts in 2019. The 2018 AWAKE survey, conference, and report also led to an invitation from the FDA for the ASAA’s community members to give input into the medical device regulatory process – stay tuned for more information in 2019 about how you can help shape the sleep apnea industry through this new initiative.
Continuing the theme of storytelling, nineteen patients, caregivers, and healthcare providers also told their stories through our “Profiles of Sleep Apnea” series of in-depth video interviews, which have become very popular on the ASAA’s YouTube channel. All this sharing of first-hand knowledge has been instrumental in shaping our understanding of the successes and challenges experienced by sleep apnea patients.
Sharing Knowledge: One of the essential functions of the ASAA is to provide impartial and understandable education on the symptoms, diagnosis, and treatment of sleep apnea. In February, the ASAA launched a new series of Facebook Live events hosted by Kevin Bradley, RN. These seven interactive educational sessions were very popular, engaging between 155 and 1,600 participants. We also continued our educational webinar series, hosting 14 webcasts with 6,182 attendees.
Creating Knowledge: The ASAA was also extremely busy on the research front this year. We participated in studies with the Patient-Centered Outcomes Research Institute (PCORI), Evidation (a patient-generated-data analysis company), and the Chronic Obstructive Pulmonary Disease (COPD) Foundation. Many of these studies concluded in 2018 or will close in the next few months, so in 2019 we anticipate a wealth of new information gleaned from these studies. We look forward to sharing the results with you.
Getting Treatment: We all know the importance of effective sleep apnea treatment, and the difference it can make in our lives. That’s why is so essential that no one should go without CPAP treatment due to financial concerns. The ASAA’s CPAP Assistance Program (CAP) provides low-cost CPAPs and supplies to patients who otherwise have trouble affording them. In 2018, CAP provided between 160 to 200 CPAP machines per month to patients, and received about the same number of donated machines per month. Thank you to everyone who donated machines or supplies to help everyone in our community have access to high-quality, affordable treatment! As we look back on 2018, the board and staff of the ASAA are extremely grateful to you for sharing your experiences; donating your time, money, and expertise; and allowing us to be part of your sleep apnea journey. We hope that you will stay with us in 2019 and beyond, working together to create a better life for everyone living with sleep apnea. From all of us at the ASAA, we wish you joyous holidays and a happy and healthy new year!