--that was posted in the forum feedback section, but I think is relevant here:

http://www.newscientist.com/channel/...st-advice.html

I'll also copy here what I wrote in response there:

I'll tell you what annoyed me in this enlightening article--the fact that Neuropathy Association would not reveal how much of its funding comes from pharma companies--the line is "The public relations consultant for the Neuropathy Association told New Scientist that the information was 'proprietary', and wouldn't discuss the group's guidelines on receiving donations".

As someone who's been active in the Neuropathy Association for a long time, and has been critical of its management and even its web presence--it's no accident that more people post on this site's, and on Braintalk's, peripheral neuropathy boards than have ever posted at Association (their board is hard to navigate)--you can be sure they'll be getting a call from me, followed by an e-mail, followed by a letter. In these days of hidden agendas, it's vitally improtant that a non-profit advocacy organization come clean as regards its income sources, and operate in the sunlight.

Just compare the 'site maps' and the overall professionalism of the Neuropathy Assn. to the Nat. Women's Health Network. The open-ness, or not, of each organization is more than crystal clear. How and where are they represented with other organizations in related professional areas? Some are, others, well don't bother. Essentially is a non-profit advocating on our behalf active in presenting and publicizing our needs to powers that make critical decisions? It's not all slick presentation. It reflects PROFESSIONALISM!

Further, how responsive are these groups to members and prosepective members? How exclusive, open and receptive are they to folks with issues such as ours. Not updating basic information in over 5 years is an indication something is definitely missing in one organization.

I better not say any more...it could become waay to long.

Super good thoughts to all! - j

Glenn, IF you do get any reply....let us know?

Glenn,
I too, am a frequent visitor to TNA's BB (I'm not a paid member- I've always thought that the monies were not going to where they claimed. I had a feeling the membership $$ was to pay 'administrative costs' - salaries )
Don't be surprised if you get no response. I think they have a mandate to ignore any agenda that's not their own, and theirs seems to be hidden by the light of this article. I'm glad you brought it up (the fact that they refused to be transparent when asked). I've often wondered where they were 'coming from' and it seems that they wish to keep that a tightly held secret.
As I mentioned on TNA's board, I had trouble (504 message and 'site not responding') on the 20th. I emailed to say the site was down and expected no response (none was necessary- it was a 'heads up') but did get one, that asked if I still was having trouble - 6 days later !

Just my two cents worth - I used to pay my dues and belong to the association - but in six years have seen received help only once that was of any use to me from them - a chart of different types of PN that was put togeteher by docs to help diagnose different neuropathies....

Even though I'm no longer a paying member - I just got the newsletter - and found it useless - just info about board members and the same info as last time about their spokesperson..... what is the value addded to a PN'er of this group?

Please dont anyone take this wrong - but if you look at the newsletter - it really is presented as only the elderly are afflicted with this disease. They dont go into detials about what can happen, and how serious PN can be.... when I got hit at 43 with this - forced to leave work 3 months later - wheelchair year later - and now severe autonomic symtoms that are affecting my heart, intestintines, BP, etc.... this is a serious disease - from pain to potential fatality. My first neuro gave me their pamplet on neuropthies when i first got sick - but potential risks and severity were not really discussed..... I would have been much more vigilant about getting more help asap then the first neruo was giving me.

For me - in addition to funding uses etc.... why isnt the whole population of PN'ers represented and also the potential severity of the disease? And, the list of doctors who specialize in PN in my area has never been updated, I saw the docs on their list - then did my own research and finally found one who is pro-active. They should be doing much more within the medical population. When I see them do this - I'll consider contributing again......

kmeb

It comes down to the basics...

DOES THIS PARTICULAR NON-PROFIT claiming to 'represent' our complex set of conditions...REALLY REPRESENT US???? All contact I've tried to have with the primarily proclaimed organization...have, to date, been negative or at least non-existent/responsive. Even IF I only contribute $20 bucks...Shucks! I wanna know what those bucks mite do. But I can't even find out what tangible benfits I mite get UNLESS I Fork over the money! Well, That's like saying buy into my 'Time-Share!' in my book. A sample newsletter is a good selling point...if the info's useful.. Take a look a NORD! AND their charity rating! Compare -no brainers. No-effort, no-brainers!

ULtimately...does this all warrant the creation of another non-profit...and all it entails..? OR merely sending a clear message to the board of a particular non profit that just such a thing could happen? Meaning: MOVE IT OR LOSE IT!? I am betting that there's been no new blood in that org's board in at least 5-10 years! Another analogy is another neuro board? Life goes on. As cats say: Life is hard, then you NAP!

Good thoughts to all. - j

among the unimpressed. I thought the newsletter was worse than useless. And so are the boards.

I feel sorry, in fact, for those with initial onset who visit there instead of here. I wandered in once and found a guy who had sensory Guillain-Barre. The other posters had him convinced his problem was permanent, because they had never heard of any kind of PN getting better. I set him straight, and he was one of the lucky ones. He recovered quickly and fully.

So, I can give specific examples of harm I've seen. The good? Not so much.

Not only is it sad...It's frightening!

I've got that Tee-Shirt....It's got holes in it and should be a rag...I AM STILL WEARING IT.


Shouldn't have to be so! -

All good things and at least ONE pain-free moment for all each day! - j

BTW - I don't recall, not being a member ever seeing a newsletter to see the 'stuff they are made of'...I for one, do NOT live under a rock!

being 'blessed' with this in my mid-50's!

Needless to say, expectations of 'retirement' and all that could be done have diminished to 'at this HOTEL,...how far do I have to walk to do A, B &C?'

This is NOT what I nor anyone could have anticipated and it AIN't RETIREMENT! - j

In addition, recently I saw that they were still making blanket statements that neuropathy can't be cured. Some can't, and some can. And I gave up on the BB years ago.

It appears that too often information is lifted indiscriminately from articles that are misleading or wrong. The "elderly" comment reminds me of the editor I contacted regarding their implication that only elderly people need worry about malabsorbing B12. In his backpeddling effort to cover his **s, he referred to people over 50 as elderly.

There's nothing wrong with being "elderly," guess I'm getting close now, but it's a terrible shame the number of young and middle-aged people who are suffering or being disabled unnecessarily because of this sloppy writing.

rose

My understanding is that Dr Latov, who started this organization, is very concerned that there has not been much funding for research on neuropathy. But that his concern is actually narrow--he's interested in research on IVIG. His work is all about IVIG, and I would suspect that the pharma donations to the Neuropathy Association are IVIG manufacturers.

I'm not convinced that the association was developed for any reason other than to raise money to support IVIG research, which, in turn, could lead to easier approval of the treatment by insurance carriers.

This is not a bad thing at all. I believe that IVIG should be more widely used than it is, if only as a trial for those with nothing else to turn to. But I don't think the Neuropathy Association can be expected to go beyond this.

The thing is, neuropathy is really not an illness. It's a simple description of one symptom. It's nerve death, and it's nerve death that could be due to a huge number of things. So raising money for neuropathy, as a general thing, is not going to happen on a large scale. Money for diabetic neuropathy, HIV neuropathy, autoimmune neuropathy, etc--that's where the money is. Idiopathic? I don't think there's a huge groundswell of interest in this. It's not a specific enough target for anyone to invest in.

Consider the Neuropathy Association a lobbying group. We need a lobby. But perhaps we need to know what to lobby for beyond IVIG research.