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