Well, I am not impressed with them. I have seen them on Today TV program...they could not even get a few minutes segment to explain it ..all they did was hold up a T-shirt, and say "join".
To me that was the most lame thing ever. I suspect... drum roll please as I get my paranoid hat on.... that Big Pharma is behind it like it is in another area, ADHD, CHADD. CHADD gets about 50% of its funding from Big Pharma. CHADD therefore, promotes drugs for children mostly. If Big Pharma is NOT donating to this Assoc. then maybe NO ONE is, and they have no money. Well, I have for a DECADE donated my time for FREE to this forum and its predecessor board, to help people advocate for themselves. (and I have met many wonderful people along the way too!)
I have something else to add: I firmly believe each patient should be his/her own advocate. Waiting and relying on an "Association" to do something for you these days, will result in a LONG WAIT.
There is a substantial amount of information on the net from reliable medical opinions, to allow most people to form their own path of helping themselves. Special interest groups, whether it is Big Pharma which wants to guard its major money making drugs jealously, or any other group ( some doctors who want your exclusive business) can be obstructing in the end to your finding some relief from your pain and stress. Some of the "treatments" offered today are financially out the of reach of many, as well, and may be toxic in the end.
I found much information on PN, myself, and share it freely here.
People reading can take it or leave it...but I think they are capable for the most part in making those decisions.
I believe PN is an environmental disease (apart from the metabolic causes--but even diabetes is somewhat environmental because of the poor dietary choices we have in our food supply). That means toxins and drugs (given by doctors) can create your PN. CNN is running a show about this now by S. Gupta, who claims that studies are showing the average American consumes pesticides regularly.
More here: this is just one alarming example:
http://ac360.blogs.cnn.com/2010/06/0...ue-group-says/
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All truths are easy to understand once they are discovered; the point is to discover them.-- Galileo Galilei
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Weezie looking at petunias 8.25.2017
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These forums are for mutual support and information sharing only. The forums are not a substitute for medical advice, diagnosis or treatment provided by a qualified health care provider. Always consult your doctor before trying anything you read here.