No problem.

I have written myself a note and on or about March 15 (is that okay), I'll simply bump this thread and say "DIANE SAWYER".

LOL

Wouldn't it be something if this could work???

We can only hope.

Thanks very much

Melody

a 'star' be the sole representative for US????? Isn't that a bit lazy?

We are probably the best, most articulate and visible presences to be advocates on PN issues than any star! So many stars underplay their neuropathies because it can affect their hirability and the perceptions of others about their ability to either perform or do their jobs.

Why are we the best sources? Because we LIVE IT! We know and learn from others here who have far worse PN pains and all the additional complications that come out of the joys of having PN. Not to speak up and educate community, regional, state and national leaders by US is totally and wholly irresponsible. We have to tools to do it. Good tools too!
http://neuropathyactionfoundation.org/index.htm Is the place to check things out. It is VERY complete. This IS a national organization that is very active, advocacy-wise, unlike many other organizations working for our 'behalf'. I did check the Neuropathy Foundation's website and found no mention of a PN week coming up, nor the GBS-CIDP organization.

We are the stars here! We can tell our councilmen/women, senators, representatives best about how PN has disabled us and how our lives have changed due to it! How important issues such as transport for the walking impaired or scooter/wheelchair bound can be difficult; getting a driver's license can be really difficult; and the 'little' things like how we keep the medical profession well in business. Well, you know what I mean. Also, so many who don't understand PN could ever understand, unless first-hand the muscular, sensory and at times autonomic disabilities that PN can cause. Only we can do that best.
Julie? I applaud you for bringing up this issue. I agree we shouldn't let those of others such as diabetes and cancer sufferers be OUR only advocates for understanding and changes, we have to educate the distinctions of our issues as well. Only we can do that effectively. 's - j

[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...

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.