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from Michael Claeys-PAN --------------------------------------------- Mrs. Flinterman, We received a copy of your email from Barbara Schirloff. I don't want to spend too much time on this because (1) there is too much important work to do in support of the Udall bill, and (2) continued focus on these issues tends to make the situation worse rather than better. But you specifically asked is this was something PAN was working on, so I wanted to respond. First of all, I strongly argue that disagreements between the organizations are much more the result of differences of opinion and differing priorities than "ego problems." It is important to get the facts on these disagreements and to know where each party stands and why, and evaluate to logic and reasonableness of each position, rather than just paint all the parties as equally at fault just for failing to agree. All this does is punish people for trying to do things the best way, and encourages agreeing just for the sake of agreeing to things that don't make the most sense. I also would argue that currently the cooperation among the national organizations is a good if not better than it's ever been. I agree it's not perfect, but things are definitely improving, and the Udall bill is one important reason. Further, while greater cooperation among the groups and greater commitment of resources by the APDA and NPF would certainly improve the chances of passing the Udall bill, I do not think it is accurate to say that the lack of cooperation has been a big obstacle to passage. We came very, very close last year, and I think impartial evaluation of the events of last year would show the lack of action on the Udall bill in the House had more to do with election year politics and other political issues beyond the control of the Parkinson's community rather than whatever internal problems we may have been experiencing. I want to take especially strong exception to the remark that "even when (the Udall bill) passes there will be struggles over who gets what money." THAT IS ABSOLUTELY UNTRUE! The Udall bill authorizes additional money be made available to scientists and Parkinson's researchers. All the grant requests will go through NIH's rigorous peer-review process and will be out of the control, or even influence, of any of the Parkinson's organizations. Will some of the money go to researchers aligned with one national group or another? Of course, but only after going through the proper NIH grant submission and review process. This is just the type of misinformation that exasperates problems rather than helping solve them. Please be assured that we too are frustrated by the lack of cooperation, communication and commitment to the Udall bill effort demonstrated within our community. At the same time, we are committed to not let this matters distract of dissuade us from doing everything we can to achieve the goals of Udall bill passage and greatly increased research funding for Parkinson's disease -- this year! We greatly appreciate all the hard work by advocates, and will continue to inform, coordinate and support your efforts. Remember, Network President Joan Samuelson and other members of the PAN Board of Directors have Parkinson's; they are highly motivated, very skilled and extremely hard working, and have little patience for anything that does not further the cause of finding the most immediate cure for this disease. Thank you again for your input and for your desire to achieve our common goal. Please don't ever hesitate to contact us with any questions, comments or requests you may have. Sincerely, Michael Claeys Parkinson Action Network Community Outreach Coordinator 800-850-4726 707-544-2363 Fax [log in to unmask]