[QUOTE=dahlek;229243]a 'star' be the sole representative for US????? Isn't that a bit lazy?
I did check the Neuropathy Foundation's website and found no mention of a PN week coming up, nor the GBS-CIDP organization.



It was in my Neuropathy Asociation News Letter That said May 12-16, 2008 is national neuropathy week. I have since found that the Neuropathy Action Foundation is advertising a 2nd annual neuropathy action awareness day for Thursday June 26, 2008. Weird that they are on different days and months. Maybe it just depends on the organization?

dahlek,

I agree. We are our own best advocates. But when Melody mentioned Diane; I just mentioned what I did since she is somewhat of a relative. But, yes, by all means we need to represent ourselves.

--if you need an article to spark someone's (Diane's) interest:

http://jscms.jrn.columbia.edu/cns/20...los-neuropathy

(I'd be happy to be contacted; I'm sure others would, too.)

The Neuropathy Assn (TNA) has arbitrarily assigned a week and would
like to think it can speak for all of us PN sufferers, but it really doesn't
do much other than fund research.
It has a really poor PR, and public awareness program.
This week has been its 'cause' week for a few years, now.
The Assn has been under scrutiny in the past for its non-disclosure of officers and finances- even tho it is registered as a '.org' - non-profit.
It does charge a membership fee to be a full member, but you can sign up for free
for BB access, and a few other features on the site.
It really hasn't been strong enough to be recognized as THE voice for neuropathy sufferers, even tho that is its only thrust.

Good article from Columbia - and a couple folks looked familiar! Yea you good guys!

And on NAF - I have utilized them initially for help with IVIG - they are very active and its much to ones benefit to get involved... here again is an umbrella association that is listening to members from different PN groups (like IVIG and those advocates at the top of that field - who are incredibly helpful dynamic people and are always at the head of the pack trying to inititate change for those who need this medication)... there are people are out fighting for us - its an uphill battle with our dismal health care system - which I guess may vary depending on our insurerer.... but if we dont keep fighting we arent going to be able to get the treatments we need.....

I think we add need to offer whatever resouces we can to the groups we know are proactive - volunteer time, etc... the more people - the more pressure...

we can't rely on one particular organization to help us!
I've learned a lot since I got my CIDP...the 'acquired' type.
1-That any diagnosis issues aren't covered by support organizations for 'INHERITED' immune diseases....they've enough problems fundraising and coping as it is.
2- That Medicare...once I 'hit' that golden age will not cover IG treatments for 'acquired' immune issues. I've good insurance now, and I will be covered to some degree then, but my co-pays are going to go thru the roof!
3- Genetic testings as Cycleops describes are VERY EXPENSIVE! And often inconclusive, so there are no guarantees there.
4-That leaders at the organization BobB referred to are advocates for IG therapy and do research in that quarter, useful research-mind you, little is being done/advocated regarding the FINANCING of IG therapies for patients, especially for those hitting that 'magic year'.
5- That IG manufacturers really have only completed one 'CIDP/IG' efficacy trial, and that, only very recently. How soon the FDA can approve this [don't hold your breath] can, does, and WILL affect possible future medicare/medicaid coverages in the future. Do consider tho, the constant added expanding demands of coverages for many other medical conditions and issues as well. The list is virtually endless!? As long as 'off-label' is available to those who can pay for experimental uses or not, the supply will not likely increase at the rate things are going, and the profits are certainly there for the Mfrs!
6- The NAF IS an organization founded by a smart, strong person with Multifocal Muscular Neuropathy...How many of you know a person with this? This person has also been a 'lobbyist' for medical companies on the national level until he got 'IT'. He knows his way around. His board is chock full of experts from all over the US and he does USE them!
7- The organization supposedly representing US is not a member of the most premier host organization for those of us - National Organization for Rare Diseases [NORD]. The NAF & GBS-CIDP Foundation Int. are members as are dozens of other prestegious member organizations for a multitude of issues, The One particular organization cited earllier, for unknown reasons, well, is NOT.
You have to pick and choose who you wish to contribute to and support. I've found no reason yet to support that one particular group....I've got to think hard how to divide my pennies in supporting others.
8- That any new medications being developed for neuropathies will probably cost 2-5 times as much as those available now-effective or not. Look at cancers treatment meds?
It is up to us to educate those around us....and do it well! It is up to us to educate to every decision-making level we can, be it in the family, medical or governmental communities. Only we can learn who we are speaking to best and put it into the context best for them to asorb, learn and RETAIN for the future, especially OURS. I really don't think a 4minute 30 second spot on a talk show or news show is going to DO IT! Nor any 15-20 second PSA shown intermittently. I refuse to let things just go at that. I'd much rather get into the Congressional Record with 'testimony'? Tho the record is thousands of pages a week, some folks who count DO read it. Enough! - j

what part of or. my daughter , her ,husband are grandson are in portland.
bob's family lives in gresham,and the both have log cabins in tygh valley.
bob and i are thinking of moving to eugene,or.in a year are two to be
by dr. amy and oldest son.
i think a star could be happy to hear from all of us.. hugs sue

I live in Salem. Only about an hour away.