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]