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