(NOTE- The delay in posting this response to Ivan is because bschirloff was
off line for 10 days.  Mikes response was, as always, sent in a timely
manner.)
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 Please refer questions, comments or requests for information on the
Community Action Team program to:

Michael Claeys
Community Outreach Coordinator
(800) 850-4726
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From Mike Claeys-

I would like to respond to portions of Ivan Suzman's post as there may
be other's in the community with similar concerns.

First of all, let's look at what we've accomplished.  Passage of the
Udall Act is an ENORMOUS accomplishment.  Many Washington insiders, even
those supportive of our cause, advised us it couldn't be done.  Many of
those same people have since described our successful lobbying strategy
and campaign as "textbook."  And that's no false praise.

Secondly, remember what the Udall Act is: it an "authorization" bill.
Despite our urgency, it was recognized that the only way to get a
roughly 300% increase in Parkinson's research funding was to FIRST pass
the authorization and then get the appropriation.  I don't know how many
people are familiar with the term "Unauthorized Appropriation," but as
someone who worked in Congress for five years I can assure you, those
are very bad words.  Believe me, identifying legislation as an
"Unauthorized Appropriation" is one of the surest and quickest ways to
kill it--especially as the budget is being balanced and discretionary
dollars are so scarce.

The Udall Act was signed three months ago.  Congress has been back in
session for barely three weeks--and has been paralyzed by
scandal-watching.  The fiscal year 1999 appropriations process has
barely begun, and it won't conclude until late October of this year.
This is not the time for the community to unravel.  There's plenty of
time to influence the FY99 appropriations bills, but what we have to do
now is rally together, get organized and stay focused on our goals.  But
more about what we have to do this year to impact the 1999 budget in a
minute.  Let's discuss what the government will be doing in 1998.

Along with passing of the Udall Act, Congress also approved 7.1%
increases in both the NIH and NINDS.  For the NINDS, which distributes
about 80% of the federal Parkinson's research funding, that 7.1%
translates into an additional $51.4 million.  Congress also included
"report language," or instructions, noting this increase and asking the
Institute to increase and expand its Parkinson's research effort.  We
don't yet know how much of that $51.4 million will go for Parkinson's,
but some will, and the more we stay on top of Congress and the NIH, the
better are chances are for getting more.

Included the NIH's Office of the Director 1998 budget is a $22 million
"neurodegenerative diseases initiative," and while we don't yet know the
exact amount, a large percentage of that money will undoubtedly go for
Parkinson's research as well.

The NINDS has also recently issued a request for applications for
Parkinson's research institutions who want to be designated "NINDS
Parkinson's Disease Research Centers of Excellence."  The NINDS will
allocate up to $5 million in total costs to support Centers in 1998, and
it is anticipated that this will include up to three Center grants (each
up to $1 million), and some smaller grants.  This program may go on for
up to five years.  This program is independent of moneys authorized or
appropriated relative to the Udall Act.

It is worth noting that in the past the NINDS has often come out against
such centers, and complained about the mandatory establishment of center
in the originals Udall bill.  This change in policy did not occur by
accident.  NINDS is surely responding to Congress's increased interest
in Parkinson's research, which of course resulted from the community's
effective advocacy campaign.

For 1998 there is also about $23 million in neurodegenerative disease
research funding in the Department of Defense budget.  Some of this
money will go towards investigating the causes and effects of so-called
"Gulf War Syndrome," but it is precisely written to have direct
applications to Parkinson's disease as well.  Whether it's studying the
influence of environmental toxins on neuro cell death, or the mechanism
of that cell death, or a variety of other important questions, this
research will clearly have an impact on the fight to cure Parkinson's.

There is also $10 million in the Department of Veterans Affairs budget
specifically for Parkinson's research.

There is also language instructing that all these various research
efforts coordinate with each other and share their findings so that
progress towards the cure for Parkinson's can proceed as rapidly as
possible.

That's not a bad year's work.  And none of the things listed above
happened by accident!  The only way the got done was through the
combined effort of the entire Parkinson's community.  (And none of this
is new information--it has all been published, some of it several times,
in PAN's newsletters and Action Advisories.)

Our community is not perfect, but it does us no good to focus on the
negatives, when so many positive things have been accomplished despite
our flaws.  We're on a roll, people, let's keep it going!

To prepare for the challenges of 1998--particularly the campaign to
secure the full $100 million appropriation for fiscal year 1999--the PAN
has put forth the Community Action Team concept, which basically is a
"National Network of Support Groups" like Ivan suggested.  It's a
program to provide every active group with a common set of informational
and advocacy materials, establish better lines of communication among
those groups and the national advocacy leaders, develop new advocacy
groups in areas currently lacking them (particularly the states and
districts of Members of the Senate and House Labor/HHS Appropriations
subcommittees) and empower all Parkinson's advocates with the tools and
information to build the bridge between the research community and
Congress, and make an even bigger impact in Washington than we did last
year.

So far the response has been great, and I we are in the office this
weekend working on getting the materials together.  It will be moving
forward soon.  The best things advocates can do now is get behind the
program, organize in your local community, and then replicate your
effective groups in areas that need them.

This is one of the important topics discussed at a recent meeting with
representatives from the Parkinson's Alliance group.  Carol Walton, Bob
Dolezal, Bob Martone and Margaret Tuchman met last week with Joan, PAN
Board Chair David Rosenthal and myself.  We had a frank and open
discussion of the challenges facing community and some possible ways to
address them.  Parkinson's Alliance representatives have held similar
meetings with the APDA, PDF and NPF.  All agree that greater
communication, cooperation and understanding will result.

With the help of the Parkinson's Alliance members, a meeting has been
scheduled later this month in Washington, DC for representative from
these national groups to get together and coordinate this year's
legislative strategy for securing the $100 million appropriation for
fiscal year 1999.

Finally, I'd like to say that Ivan's comments about Joan and Jim Cordy
are particularly ill-timed.  Just ten days ago, they both delivered
stirring testimony before the important House Appropriations Labor/HHS
Subcommittee.  They coordinated their testimony ahead of time, and both
made strong impressions on Chairman John Porter, one of the most
important figures in Washington in the field of medical research
funding.  Jim effectively conveyed our communities sense of urgency
through his words and his homemade hourglass, and Joan got Porter to
agree on the record to visit Parkinson's scientists and research
facilities in his Chicago area district.  Well done.

We understand the frustration people feel over the perceived lack of
cooperation among the various national organizations.  In fact, given
the size of our staff and annual budget, and the understanding of what
could be accomplished with a truly integrated, aggressive lobbying
operation, we share everyone's frustration--big time!  But none of us
can let frustration lead to inaction.  We've all worked to hard and come
to far to let fears or frustration derail our efforts--especially when
things have really never been better.

Our opportunities will NOT SLIP AWAY for the very simply reason that WE
WON'T LET THEM--none of us.  Let us not follow the example of Washington
and become paralyzed from preoccupation with scandal, intrigue or
process.  Let us remind Washington what's really important--that our
country can only realize its potential if its citizens are free and
healthy enough to realize theirs.  Recognizing what's been accomplished
and what work remains will keep us all focused and positive, and will
get the job done.

Please refer questions, comments or requests for information on the
Community Action Team program to:

Michael Claeys
Community Outreach Coordinator
(800) 850-4726