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