Share your sleep apnea story with the American Sleep Apnea Association (ASAA)

[MotherT]

Are you a #sleepapnea patient with a story to tell? Check out our blog to see how you can participate in-person on 9/19/19 at the #AWAKETOGETHER Summit. http://bit.ly/2GwAUVv

[prodigyplace]

What is the purpose of your group?
Are you working to get legal blocks removed so apnea sufferers can have better control over their CPAP treatment? If you are not working on that then how are you meaningfully helping?

[chunkyfrog]

Hmmm, yes, please. A little background would be nice.
What is your motivation?
Where is your mission statement?
When patients are having difficulties, who is available to help?
This forum is active 24/7, when patients are wrestling with the mask,
machine, and a myriad of other problems.
How is it that all those professionals are busy stuffing their pockets by day---
are never in the office when they are NEEDED?

[USMCVet]

Here is link to their website https://www.sleepapnea.org/

[jimbud]

Motivation : $$$$$$$$$$$$$$$

Mission statement : $$$$$$$$$$$$$$$

When patients are having difficulties : Log in and ask cpaptalk.com

How is it that all those professionals are busy stuffing their pockets by day---
are never in the office when they are NEEDED? : I dunno, maybe it's more fun than dealing with sick people.

[prodigyplace]

The American Sleep Apnea Association (“ASAA”) was founded in 1990 by a group of physicians and medical device industry representatives

Hmmm.

The ASAA is a patient-centered, ethical, evidence-based, accountable, and inclusive organization.

Do they really have our best interests at heart? I am not so sure...

Capture.PNG

[USMCVet]

It's looks like they are an organization that is trying to raise awareness about sleep apnea and help people get treatment.

[jimbud]

How can you not trust someone with "Mother" for a first name?

I'm going and taking a load of laundry for her to wash.

JPB

[Pugsy]

There have been AWAKE chapters ...even local in some area...long before I ever started CPAP therapy.
They would hold little local gettogethers for users to come visit, share stories, see new masks or new whatever, eat cheap goodies, etc.
Someone has to pay for those little parties.
What's so wrong about the big name companies paying for cheap goodie food for you to eat, drink and be merry?

Some of you all have a real skeptical mind today.

There's nothing sinister going on here....the AWAKE chapters are having a big national party Sept 19. Big deal. If I lived close I would go just to see the latest and greatest stuff that is coming up.
Probably better goodies to eat and yes, the big name companies footing the bill get a chance to hawk their stuff.
Somebody has to pay the bills.

What do you all expect....cpap users to donate their money so they can get together and share stories?

AWAKE groups are just mainly a bunch of folks like our community here who get together and share stories and maybe offer ideas.

Bigger cities are more likely to have active local parties....there is an AWAKE group in my area but they don't ever do anything or have parties. Maybe if more people would participate they would have more parties.

[jimbud]

OK, you win.
I will shut up and do my own laundry.
JPB

[chunkyfrog]

The apnea support group that I attended falsely represented autopap machines as undesireable.
They were shocked when I pointed out the fact that ANY APAP can be run in cpap mode--
They also had a problem with patient adjustment and data access.
We were "disinvited" to future meetings..
The truth was a bit too much . . .

[Janknitz]

I'm close enough that I'm going to attend. There might be some free swag and might learn a thing or two.

I can have an open mind and still be a critical thinker.

[prodigyplace]

The apnea support group that I attended falsely represented autopap machines as undesireable.
They were shocked when I pointed out the fact that ANY APAP can be run in cpap mode--
They also had a problem with patient adjustment and data access.
We were "disinvited" to future meetings..
The truth was a bit too much . . .

So, they were NOT patient focused, but profit focused.

Why am I not surprised??

[chunkyfrog]

And yet I keep hoping.

[Pugsy]

Hey ChunkyFrog....how long ago was it that you were uninvited?

I don't know if the old way of thinking has changed any. Remember these AWAKE groups are sponsored initially by the big sleep organization ASAA which was/is mainly doctors. You are going to get the old way of thinking until doctors and the equipment suppliers and the manufacturers can come to grips with the fact that the end user (us folks) actually do have a brain and we use it and we don't think that the medical profession walks on water and we don't blindly follow their lead either.

You go to a party paid for by doctors and manufacturers....is it really a big surprise that the main theme of the party is going to follow whatever lead the doctors and manufacturers are going with at the moment?
They aren't going to offer an in service seminar on how to change anything on the machine or use any software. Hell, they won't even let on like there is any software to use because we are too stupid to understand it anyway....or that's how they think.

It's a party....paid for by someone that may not think like we do. You treat it like any other party that might have people we don't necessarily agree with...we eat the free food, drink the free drinks, wander around and commiserate with fellow cpap users and some of them might even think that the docs walk on water...and we move on.

Take what is useful to you and leave the stuff you don't care for.