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Ken, I knew you would do what could. I am however stumped as to how we can organize our efforts. There is in my opinion still a need to get the word out. I was extremely dissappointed in Michael Claeys message today. He did a good job of explaining the process to appropriate funds and what other funding will be available eventually. Beyond that I saw very little to convince us that alphabet soup of Parkinson's Organizations have a plan. I didn't see specifics about what these materials are going to do for the PWP's that don't know how to access information or are so self-conscious about their movements they never see the light of day. We need to reach out in the many rural areas and to less affluent PWP's who don't have access to computers or any other type of communication line to know of the benefits of this bill. You can provide all the literature you want but if you don't provide a link for its delivery, you might as well not print it. I want to know what are the plans on finding a way to impact these people. A lot of PWP's still don't know what's available either in treatment or homecare. The reclusive nature of these people has a significant impact on their progression. Not only are they frustrated and depressed, they are sadly in need of some compassion. I also have a problem with the lack of plan to unify the national organizations into one streamlined entity. This would cut the costs of their budgets "big time" and free up the funds necessary to actually reach people in need. We all understand the importance to expedite funding. We need to go further than that. We need more help from the nationals with the network of support groups. I know these people are advocates of our cause, but it is a cause of consternation when we have in fighting. Coordinating testimony is a step in the right direction. And, I am not naive enough to think this will be solved any time soon. Egos, financial considerations and the nature of organizations to be competitive will not be solved overnight. However, I will not rest until there is an agreement to unite. It makes economic, logistical and common sense. Finally, Michael when you remind of us that there is a scandal mentality you do in fact help to perpetuate it. Oops, I just did it too. Although you were obviously trying to communicate a positive message, it really was defensive and full of excuses. I applaud your efforts in seeing the Udall Bill passed, however, I can't condone a listing of what you have achieved. We all know about the funds that are earmarked to help bring a cure. I would hope you would look to the future and put all your efforts into unification, appropriation of funding, and how we can most efficiently deliver information to those who need it. Thanks for your help! Greg Leeman 37/6 [log in to unmask] -----Original Message----- From: KEn Becker <[log in to unmask]> To: Multiple recipients of list PARKINSN <[log in to unmask]> Date: Tuesday, February 24, 1998 7:50 PM Subject: Re: WORLD'S PARKINSON'S DAY >Greg, I am going to make a brief statement about what PD is, and ask people to >support a world Parkinson's awareness day, April 11, and ask everyone I know >who has net access to forward it to anyone and everyone they know, to get the >word out. I will get it done later tonight. Good luck in your efforts. We can >do it! [log in to unmask] >