in that PN is often secondary to other medical conditions. AND most research and treatment advancements for OUR condition is accomplished secondary in the work being done for those other primary conditions.

On the political front [and, I believe recruiting celebs as vocal advocates IS political] and as one who lives in DC, I've seen how the 'process' works. WE have to make as many local and regional folks aware...attending city or council meetings in which accessability issues are on the agenda is a first step. Your county rep could be running for the US Senate or more in a few years. Contact you Senate and House reps on the state and national levels...meet with them, make them [and more important-the staffs] aware of this 'condition' and all it can and does impact. I've not seen any 'action' packets produced by the primary neuropathy assn, but, there is a 'neuropathy action' organization, which is recent that may provide some clues. NORD also presents a strong voice for those of us who are, in a way not part of one of a vocal advocacy group.

Does anyone here live in NC? Helms now, is a sort of free agent, still having lots of contacts and approaching him as a spokesperson could be a viable option? Know of a city mayor, or state rep with PN? Ask them to speak, and speak up! Speaking up gets press, either paper or media. Press can educate.

As PN affects those with diabetes, cancers, strokes, alchohol, etc. Those affected have groups that are vocal and have some clout. We really should start by [if we can] attending their meetings and offering to speak on the subject at their meetings. To let them know there are treatments, true ways of diagnosing, and that the world doesn't END if you have it! Let's not forget those folks with MMN and other neuro-m conditions...they seem to be a bit more vocal. We are the same in our pains, treatments, etc, just affected a bit differently.

The more we advocate on our own behalf, the more people will begin to understand what IT MEANS. With any understanding can come inclusion in many decisions...be it insurance, accessability, diagnosis and treatment issues that occur on ever so many issues. No one should have to undergo the 'abuse' many of us have had to endure when we acquire this condition. The way to start is thru active education efforts.

Of course, that's when we have the energy! - j

At least, it wouldn't be boring?