 |
 |
Unity of Purpose s organization Aprilt seen a plan although Im convinced that many are working very hard on developing support for this legislation. I feel it I s essential to not only have a plan but to communicate it to those who must implement it. Thats us if it involves a rass roots effort I hope I am pleasantly surprised and a well thought out, comprehensive, agreed upon plan will be unveiled. If not I pledge to do all I can to help formulate one. I think such a plan should have the following elements: 1 )Washington - where you and others experienced in that portion of America isolated from the rest of the world (inside the s) s Disease that are vitally interested if not highly motivated. They must be directed in some manner to be effective. Key to this communications is keeping abreast of how the battle is going. To me that's a data base of all the Senators and Congressmen. Possibly you have the rudiments of one in progress. This can be a massive job in itself, but we have a lot of talented people throughout the country. Many with computer skills and linked by electronic communications. Let's identify the resources we currently know (who are the PD computer specialists) and then advertise via the Internet for others as needed. While its true the Internet touches only a small percentage of the overall population, it probably reaches a high percentage of computer junkies. This data base should have different levels of access. Confidential information on our leaderships thoughts as to where various individuals stand and how we might effectively lobby t think there is anyone opposed to curing Parkinson's Disease so that although some strategy with respect to particular officials may be should remain confidential, in general I see no reason for secrecy. Anyone going to Washington to the forum, please look me up or E-MAIL or call beforehand. [log in to unmask] 412-521-9584 them. Position papers available to at least the grass roots leadership if not everyone identifying in a more sanitized manner the position of each legislator with om addressing this to an eclectic distribution and am also posting it on the Parkinsn List. My plan is to publish the majority of additional correspondence to a wide distribution and I encourage all to do the same. Good communication is vital. This is an unusual battle we are waging. I donbviously more effort spent on those identified as key. Finally therem sure to manyothers. However our efforts to raise awareness of Parkinson's Disease might still bear fruit so I suggest we concurrently target those in influential positions in NIH or whatever funding agencies are appropriate so that we might still achieve increased funding for Parkinson's Disease. Ishould be a highly visible measure of where we stand that should be published regularly. Perhaps the old United Way type thermometer graphic for both the house and senate identifying those who support, and cosponsor. There is always the possibility that the Udall Bill may not be enacted. That would be a devastating blow to me personally as I 2)Home Districts - where a grassroots campaign must be waged. Our success will be a function of how effective we are in both areas. That in large part will depend on how well we communicate, both between the Parkinson's Disease organizations and between Washington and the Grass Roots. There are several million people, if you include friends and families of those who have ParkinsonBeltway) must interact effectively with the factions within the Parkinson's community, the legislators and their staffs; whether they be for, against or on the fence with respect to the Udall Bill. ( In one respect its a curious battle as I don't think there is anyone really against curing Parkinson's but rather only those who place different priorities on curing Parkinson6 after the Udall Bill Breakfast in his DelMarVa newsletter several weeks agve had discussions with representatives of the APDA, the NPF and PAN. I am planning on attending the Parkinsons Advocacy Forum in Washing DC May 15-17 and hope that these groups will unveil a comprehensive plan the objective of which is to have increased funding for Parkinson's Disease. The most immediate focus of our attention is enactment of the Morris K. Udall Parkinsons Research, Education, and Assi stance Act. I haveno. He described an atmosphere that did not appear to have what I am calling unity of purpose among the Parkinson's Disease organizations present. I use the phrase nity of Purpose as I dont wish to get involved in the issue of merging National organizations. I understand that issue has been addressed recently and agree ment could not be reached I have talked to numerous people regarding the need for a unified agreed upon plan. In particular I My name is Jim Cordy, Im 47 and have had Parkinson's Disease for 7 years. Since having to go on disability from my job as a metallurgical manager with Allegheny Ludlum I have become active as a volunteer in the Neuroscience Dept. at the University of Pittsburgh working with the significant staff doing research on Parkinson's Disease. Also I am president of the recently formed APDA chapter in the Pittsburgh are. I was alarmed when I read Will Johnsons account of the meeting of the various Parkinson