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--------------------- Forwarded message: From: [log in to unmask] (Tebay, Wendy) To: [log in to unmask] (PDList) CC: [log in to unmask] (athome), [log in to unmask] (Kirta), [log in to unmask] (PAN), [log in to unmask] (Return requested) Date: 95-08-03 12:41:17 EDT Hey everyone, I called about the upcoming conference on the possible link between environmental factors and pd (which is actually going to be held in Research Triangle Park, NC, Sept. 17-19) and requested some info, as I intend to go and stir up some trouble there. (I told her how I'm trying my best to do it here too!). The subject of the workshop is to determine which areas related to this topic (environment and pd) should research focus on. She said some attendees believe that a link does exist, with probable genetic influence on susceptibility, but also that a few of them aren't convinced of any relationship between the two. I don't know how many other of us victim-types are going, but I'm thinking of not only going down there armed with all the arguments and info I've got (some of which I've posted to the list), but I'm also thinking of soliciting input from everyone on the list as to: 1) what, if any, outside causes (pesticides, metals, solvents, etc) have they been exposed to that they feel may have played a role; 2) at what age were they diagnosed with pd (the younger they were, the more likely environment was a factor); 3) what ideas can everyone come up with as to the specific research areas related to this topic that they think researchers should focus on in the near future. Even tho' our input would be more anecdotal than scientific, if they're looking for ideas on which directions their research should be focussed, they've gotta start somewhere, and I think we can provide some useful input. I really think we'll get to all kinds of solutions faster if they seriously consider our input and if related information is better disseminated outside of the medical circles into the mainstream. In this way, research and it's conclusions will not only be influenced by abstract science (not that I'm against science - I'm a physicist/engineer), but it will take into account also the perspective of those who have to live with this annoyance every day, an entirely different perspective from those researching it. Any and all inputs are welcome. You can either post them to the list or send them to me directly at [log in to unmask] Already I know of a few good examples to relate - I've already heard myself of two cases of high school age women being diagnosed with it and even a 4-year old (whom Pat Schark recently brought to our attention). These don't even include my own experience, and that of many of this list, whom have also shared their stories in the past. As much as I support the Udall Bill for getting more research $$ for PD, I also advocate more dialogue between researchers and "victims". Not only could this help guide their focus and allow us to be better able to keep abreast of developments and provide our 2 cents worth (which is actually worth more than 2 cents), but think, it might even save them some money!! What could be better than having people with a vested interest in finding both causes and solutions willing to help for free? Sounds like a bargain to me! Well, I really hope this stirs up some interest and everyone who's interested will participate. I'll leave people's names off of the info I pass on to them if anyone does not want their's given out. My main intent is to not necessarily given them a list of names, but a tally of sorts of the types of substances (and anything else in our lives) which we feel may have played a role, a general chart showing the overall age distribution at which people were first diagnosed, and a list of research ideas that hopefully they can make some use of. Might as well make good use of the information highway! Also, if anyone else is planning to attend, please let me know. Maybe we could all get together ourselves and do some additional 'brainstorming'. I'm looking forward to this! (....Stir that pot good!) Wendy Tebay