Dear Charlie: An answer to your question is needed. My understanding - and I do not have categorical evidence - is that APDA did participate in the process, but signed off earlier, sending a letter to the Vice-President on its own. At approximately the same time, I was in contact with APDA's Joel Gerstel, seeking a general supportive statement for the effort to be undertaken in Miami in January. Initially I heard a positive response, but the door was closed quickly. No supportive letter would be sent by APDA. Gerstel, it might be added, was a co-signator to the letter to Gore. Unity is an elusive ingredient, it seems, among executives in the Parkinson's community. In addition to a reply to your question, further discussion of how to deal with inter-organizational bickering is critical. A divided house does the movement no good, not in organizing support among PWPs, and not where it counts so much, in Washington. Bob Dolezal At 5:07 PM 12/26/97, Charles T. Meyer wrote: >Delores; > >Congratulations!!! To get that group of people to sign the same document >was an >accomplishment. Was APDA asked? That would have been the crowning achievement. > >Charlie > >MR SEYMOUR GROSS wrote: >> >> -- [ From: Seymour Gross * EMC.Ver #2.5.3 ] -- >> >> To All List Members, >> In view of the recent dialogue concerning what is perceived by many to >> be a lack of unity among the Parkinson's organizations, I thought you >> would be interested in the following. >> I recently attended a talk given by Dr. Art Caplan, Director of the Dept >> . of Bio Ethics at the University of Pennsylvania, who was an advocate >> for the Udall bill. Afterwards, we spoke briefly of the efforts that >> need to be expended now to actually get monies appropriated. He said >> that if we got a letter to him he would see to it that, via a friend, >> it is given to Vice-President Gore. I passed this information on to Jim >> Cordy and it was presented to the steering committee, which as you know, >> includes representatives of the Parkinson's organizations, in an attempt >> to get as much organizational unity and support for a joint letter to >> the Vice President as possible. In an example of a collaborative >> undertaking, Bill Turenne, Jr. of NPF, and Michael Claeys of PAN drafted >> the following letter which is addressed to Vice President Gore. The >> letterhead reads, "A Joint Statement From National Parkinson Foundation, >> Parkinson's Disease Foundation, Parkinson's Action Network." The letter >> is signed by Lawrence S. Hoffheimer, NPF; Lewis P. Rowland, M.D., PDF; >> and Joan I. Samuelson, PAN. The text is as follows: >> >> "As President Clinton prepares his fiscal year 1999 budget request, we, >> the representatives of the National Parkinson Foundation (NPF), the >> Parkinson's Disease Foundation (PDF) and the Parkinson's Action Network >> (PAN) urge you to impress upon him the importance of providing the >> resources necessary to fully fund the provisions of the Morris K. Udall >> Parkinson's Research Act of 1997. >> >> "On November 13, 1997, the President signed the Udall Act into law as >> part of H.R. 2264, the 1998 Labor, Health and Education Appropriations >> bill. For the first time in history, the federal government has >> recognized the enormous human and fiscal costs of Parkinson's disease, >> acknowledged the tremendous research potential and acted to specifically >> increase our national research investment. But more needs to be done. >> >> "On behalf of the over one million Americans who live with Parkinson's >> disease, we hope you will use your influence during development of the >> Administration's 1999 budget request to include sufficient resources and >> a specific directive to fully fund the $100 million in Parkinson's- >> focused research authorized by the Udall Act. >> >> "Enclosed is a background information sheet on the history of the Morris >> K. Udall Parkinson's Research Act of 1997, along with a list of >> congressional cosponsors that is a testament to the widespread >> bipartisan support this measure has enjoyed. >> >> "Thank you for your interest and attention to this important matter, and >> please do not hesitate to call on any of us for information regarding >> any aspect of Parkinson's disease." >> >> This letter was delivered to Dr. Caplan on Monday, December 22. My >> thanks to NPF, PDF, and PAN for agreeing to this joint effort which can >> only benefit the Parkinson's community. >> >> Best Wishes for a Happy and Healthy New Year, >> Dolores Gross >> [log in to unmask] > >-- > >CHARLES T. MEYER, M.D. >Middleton, WI >[log in to unmask]