Wake up, it’s Sleeptember

Friday, September 4, 2015

WASHINGTON – As part of its new Sleeptember campaign, the American Sleep Apnea Association is looking for its Ice Bucket Challenge.

“I would love to tell you what it is, but we don’t know yet,” said Adam Amdur, COO. “We invite the community to help us figure it out, whether it be a pajama party or a pillow fight or a hold your breath campaign.”

In September, the association did a soft launch of Sleeptember, an annual campaign to raise awareness of sleep disorders, promote behavior modification, and engage the public in fundraising to support patient-lead, rather than patient-driven, research.

The campaign seeks to put patients in the driver’s seat, says Darrel Drobich, Sleeptember consultant.

“We think the academic model and the government research model is stale, and who better to help innovate and come up with what patients really want than patients?” he said. “Sleeptember is an opportunity for patients to help fund that research and also decide what happens to that data in the future. It’s patient democracy working with seasoned researchers.”

With Sleeptember, ASAA also seeks to promote “non-preachy” patient education.

“We really want teaching behavior modification and getting people screened to be fun and engaging,” said Drobnich. “We’ve done a good job raising awareness, but there’s much more to do to actually change behavior individually and societally, and in public policies around this area.”

While ASAA focuses on sleep apnea, it seeks to broaden the conversation among patients, many of whom also have comorbidities like diabetes or heart disease, and break down the silos between them, says Amdur.

“When my fellow diabetes patients sit down and have coffee at an A.W.A.K.E. meeting or a COPD Meetup, they can share heart knowledge and we can share sleep knowledge,” he said. “It’s a matter of reaching out to other advocacy groups and having a conversation about sleep and diabetes, and sleep and heart disease and how they go hand in hand. Until you manage the sleep, you can’t manage any of your other comorbidities.”