Lung Assoc -Any help?

[Blossom/Jackie W.]

Most countries have a Lung Ass...

Have any of you used them in any fashion as a COPD resource of any type. How did you find them to be?

[the bear]

They love you if you donate to their cause but are very reluctant to share anything. The seem to think they are the only ones that have any clout. bear.

[cocojax]

I have left a voice mail for Carol Madeley she is the Director of Respiratory Programs for the Ontario Lung Association. Bear she was at the Rehab Clinic in Courtice till she got the job at the lung association. I spoke to Jackie about this before and think I even posted something about it. I was going to ask her is she pop into our site with any advice for us she might have. She may be too busy, but I think it is worth a shot. She is a lovely lady very knowledgeable and caring. As soon as I hear back from her I will post. Jackie anything you specifically want me to ask her??

Carol just called back and I asked if she would come on our website, to give any suggestions etc. advised that we have some information on here that might be useful to her. She will be glad to check out our site.
Here is a link for Breathworks
www.lung.ca/diseases-maladies/copd-mpoc/breathworks-actionair/index_e.php

[kygal]

I haven't found them very proactive...when you ask them about support groups, things offered in your area, etc. if there's nothing, that's the answer you get and nothing else. Even when I asked if there could possibly be a support group for caregivers, I basically was told there wasn't one available and that was it.

I'm still pursuing that possibility but now with the rehab unit where Doug is a patient. But, I've still not even gotten a nod so far. Maybe I'm asking too much, I don't know.

Mary

[Blossom/Jackie W.]

Ellen; thank you re: anything specific to ask. No; not really though a few folks here that live in Ontario might have.

I'm talking "generic" here. Whether it's the Canadian LA or American or New Zealand, the U.K. no matter. They all seem similar.

Mary; were thyd able to give you any helpful direction at all??

I'm simply curious "from a COPD standpoint" has anyone had any interaction and the like.

[cocojax]

Hopefully Jackie can answer some of these questions and concerns.

[Blossom/Jackie W.]

You're not asking too much at all Kygal /Mary;

Ellen; I'm familiar with the full line of Breathworks materials etc. It's a little "old fashioned" though the material inside/info is decent. I do caution folks though becasue they are too quick to address end of Life decisions (in the booklets)which is a personal concern of mine when dealing with newcomers to the disease. Additionally I don't believe it's the Lung Ass's place to even address that issue. (Especially when you consider or combine it with their legacy foundation/planned giving stuff....sorry e'one I hope I've not offended) To quote.... "Reduce taxes payable at your death..."

So; what about the rest of you guys....i.e. the U.S? Have they helped you with COPD related things; if so how? We might be able to learn from you. How about New Zealand?

[morningstar]

The Lung Assoc. here is nothing to write home about. When I first called them I wanted a list of all the lung doctors in the tri-state area. They didn't have one. Or know where I could get one. To be honest I found them to be totally dumb. I tried to explain I had some information on COPD and thought they could pass it out in there mailing. The "girl" didn't even know what I was talking about. And upon my explanation she hadn't retained any of my information either. That was a good year ago I guess I have never bothered to call back. She was to have her boss call me when she came back from lunch. All I can say is I am glad I am not paying that lunch check.