The American Sleep Apnea Association looks to help lead a patient revolution in changing the way medical research is conducted and funded.

This September, the American Sleep Apnea Association (ASAA) and numerous partners will launch Sleeptember, a year-long patient-led, patient-supported campaign designed to create fun, engaging online and community events to raise awareness of the public health impact of sleep loss, and to raise funds for medical research and advocacy efforts.

Sleeptember will use the power of social media to bring together people facing health challenges and advocates to form a powerful community that will support and comfort one another and create groundbreaking research and advocacy programs to change how research is conducted and funded.

“The majority of people with sleep disorders are still undiagnosed and untreated; however, the ASAA and its partners believe that many are being treated for other common associated diseases and conditions such as heart disease, stroke, hypertension, diabetes, atrial fibrillation, obesity, and mental health,” says ASAA board chair Will Headapohl. “Our underlying belief is that if you improve sleep, you improve your overall health and can control or better manage some of these conditions. We are not only about awareness, but behavioral change as well.”

The Sleeptember website, which will be available at www.sleeptember.org in September, will include a dynamic community forum that will allow members to communicate and share information, experiences, and pictures with one another through the site and members’ mobile phones and tablets. Other elements will include a peer-to-peer donor platform that allows members to participate and engage others in fundraising campaigns, challenges, and events, or to create their own. Additionally, the ASAA will announce a landmark research endeavor later this fall that will tie into the campaign.

“The idea of Sleeptember resulted from the ASAA becoming a completely patient-led organization over a year ago and our participating in the National Patient-Centered Clinical Research Network. From these experiences and looking at what organizations like the Movember Foundation and the ALS Association have done to raise awareness and funds, we have a much better understanding of the types of partners and researchers we want to work with and how to directly impact future research,” says Adam Amdur, ASAA chief operating officer. “It’s time for us to stop waiting for the government and academic researchers to find answers alone. Patients want to control our own destiny, raise funds for research, and have a significant say in what gets funded. We are looking to transform recent patient-centered efforts into patient-led research.”

Founded in 1990, the ASAA is celebrating its 25th anniversary as a leading patient-led advocacy group in sleep medicine and has been at the forefront of trying to help increase awareness and education related to sleep apnea.

Tracy Nasca, ASAA executive director, says, “People sign up at Sleeptember.org to become a ‘Sleeptember member’ and participate in a number of activities to increase awareness of sleep, improve their own sleep habits, and raise or donate funds for sleep and medical research. Funds raised will be committed to combating sleep disorders and comorbid conditions with a focus on certain cancers, heart disease, mood disorders, and pediatric health. We fully realize that any good campaign has to grow organically and it will take time for us to fully have the impact that we seek, but we and our partners are extremely excited about the possibilities that lay ahead.”

ASAA: Sleeptember’s Vision, Values, Challenges

VISION—Accelerating patient-led and patient-supported research to get the answers to the questions patients seek.

FUN—We are committed to spreading awareness, education, and support through fun and engaging activities and events. We would rather laugh than cry because it indeed is the best medicine!

ACCOUNTABLE—Because we are patient led, we believe that all patients have the right to determine their treatment, know what happens to their data, and have a direct say in where their dollars go to support research; we will be transparent in where all money is spent. If you don’t know, ask and you will receive!

PARTNERSHIPS—Friends are what makes the world go around and we love making the world go around. There is power in numbers and we all must work together to change the game to help ourselves.

FACILITATE CHANGE—If you are not progressing, changing, adapting, you are stagnant, paralyzed with fear, and withering. You learn more by failures than you do success. Go big or go home!