Glenn, as you know - I have gastroparesis due to autonomic neuropathy - and belong to a gastroparesis group - they were very proactive when Johnny Cash passed away to try to make sure by contacting press, govt. officials, etc. that people knew he had this condition - which is largely unheard of except by those of us that have it.... and got quite a bit of press out of the effort about the condition......

Also, I know the amyloid group - (I had a positive biopsy 3 years ago and they put me on email list - I've stayed on it cause never was ruled out completely and now am again being tested because of cardiac complications) - but they do the same - (sorry if this is morbid) - they make sure that each person we loose with amyloid that it is now listed in the published obit - and get as much press out as they can...

General PN is much tougher I think - there are so many different causes and is a secondary condition - and perhaps thats why we have so much trouble making our cause known.... I know the PN Assoc. has Delores Heart as spokesperson - but shes only one person - and not that well known really... (people tend to relate to what/who they know-have heard about) - not much help with an answer here - but we do need to raise awareness - its a huge job - do we find high profile people with PN? (and how?) - do we inundate our government officials with a deluge of messages from us everydayers???????? I think we do need to do much more - any one ideas????? (this is a big one to wrap arms around)

Also, I know with both the groups I mentioned - they have managed to find doctors to speak on their behalf to the govenment... I believe we have a few out there working for us - but maybe we could appeal to our docs who are competenent - and somehow garner more awareness in that arena?

And Glenntaj - you would be a perfect spokesperson with your extensive knowledge of this disease -

Food for thought for next year eh???????