A Message From Michael Claeys, Community Outreach Coordinator for the
Parkinson=92s Action Network
July 20, 1998
As always, questions and comments should be referred to Michael Claeys
at phone: (800) 850-4726, fax (707) 544-2363 email: [log in to unmask] or
mail: 818 College Avenue, Suite C, Santa Rosa, CA 95404.

Confusion and frustration is being expressed on the Listserve over
several issues relating to the Udall Parkinson=92s Research Act and this
year=92s campaign to secure full funding.  Although I am a PAN employee, =
I
think I can speak for all the national, regional and local Parkinson=92s
organizations when I say that we understand your frustration and regret
that we cannot always be available to immediately address your questions
and concerns.

Speaking again for PAN: to ensure the fastest response to questions or
requests, please contact PAN directly at (800) 850-4726.  We receive
faxes at (707) 544-2363, and email at [log in to unmask]  If no one is
available to take your call, our voicemail system is always on =96 please
leave a message and indicate how we can contact you.  Whenever PAN
employees are in Washington, DC (as we are now), voicemail and email
messages are forwarded to us.  Messages do occasionally slip through the
cracks, however, so if you don=92t receive a response in a few days,
please don=92t hesitate to contact us again.

PAN=92s number one priority is to pursue a cure for Parkinson=92s as fast=
 as
humanly possible.  We recognize there are other important issues related
to the health, wellbeing and fair treatment of the Parkinson=92s
community, and we devote time and resources to many of these areas.
Facilitating a cure, however =96 and doing it as fast as humanly possible
=96 remains our primary motivating and organizing principle.  Research is
the engine that is going to deliver the cure, and it takes money to fuel
the engine.  There is no shortage of talent and no shortage of promising
ideas in the Parkinson=92s research community =96 the only shortage is
money.

Currently, the resources of the federal government combined with the
quality of the peer-reviewed research funding process of the NIH
represent the best bet for realizing a cure.  Add to that the public=92s
constitutionally guaranteed right to petition the government and
influence policy, and we have a real fighting chance.  None of these
systems is perfect =96 to paraphrase Winston Churchill, "It=92s the worst
system I know of, except for all others."  But this is the system we=92ve
got, so we can either do our best to work as hard and as smart as
possible within it, or we can let Parkinson=92s run its course and hope
for a miracle.

Much of the Listserve=92s Udall discussion has centered around some of th=
e
"report language" that accompanies HR 4274, the House=92s Labor/HHS
Appropriations bill for fiscal year 1999.  Reports are like sets of
instructions Congress sends to government agencies when it approves
their budgets.  Congress says, "here=92s your money, and a few
=91suggestions=92 for how to spend it."

Report language does not happen by accident.  It is a big deal and takes
a lot of work to get any specific report language for a cause like
Parkinson=92s.  Hundreds and thousands of drafts of suggested language ar=
e
submitted to the committees by Members of Congress, lobbyists and
community representatives.  The committees then can completely disregard
the suggestions, or change the language to suite them.  It is really a
dance of political power =96 the more power you have, the stronger the
language you can get in a report, and the fewer changes you are likely
to receive from the committee.

HR 4274 is the House=92s Labor/HHS bill and report =96 but the Senate wil=
l
make up its own bill and report in September.  The Senate=92s bill will
surely have even more money for NIH than the House=92s bill, and the
Senate=92s report will surely include stronger language for Parkinson=92s
than the House=92s report.  And the Senate=92s bill and report aren=92t e=
ven
written yet.  It=92s still a work in progress, and there is still time to
influence what it says.

In the coming weeks PAN will be mailing out and posting on the Listserve
lots of information updating the Appropriations process and advising
people what they can do to impact the process.  The message is simple:
Tell Congress, "Whatever you do and however you do it, include
sufficient funds and directive language to FULLY FUND THE UDALL ACT!  We
want, need and deserve $100 million in Parkinson=92s-focused research in
1999!"
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continued on - Udall PAN important message 2 of 2=0A