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hi all and especially mary yost and mike claeys

this is great news!
(even to a canadian!)
thank you for updating us

i am going to take the liberty
of cross posting this to the MGH webforum

janet

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Date: Thu, 21 Dec 2000 18:38:54 -0800
From: Mike Claeys <[log in to unmask]>
Subj: PAN Labor/HHS Appropriations Update
To:   Mary Yost <[log in to unmask]>
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A Parkinson's Disease Advocacy Update

Date:   12/20/2000
Re:     FY 2001 Labor/HHS Conference Report Language

On Friday December 15, the House approved by a vote of 292 to 60 and the
Senate approved by unanimous consent the fiscal year 2001 omnibus
appropriations package, which includes the Labor/HHS appropriation bill.

The $108.9 billion Labor/HHS bill contains $20.3 billion for the National
Institutes of Health, an increase of $2.5 billion (14%) over fiscal year 2000.

Back on October 29, Congressional leaders has reached agreement on a 2001
Labor/HHS bill totaling roughly $112.8 billion, but this pre-election deal
was never brought to the House or Senate floor.

In November, Republican House leaders demanded that the Labor/HHS bill's
total be cut by $4 - 5 billion.  Among the elements of this overall cut was
a $200 million reduction (from $2.7 billion to $2.5 billion; or from 15% to
14%) in the proposed increase for NIH.

The fiscal year 2001 budget is the third installment of the five-year
effort to double the NIH budget from 1998 to 2003.

The most direct equation to achieve "NIH doubling" is five consecutive
increases of 15%.

It is impossible to know if this minor deviation from the formula will
significantly impact or delay the ultimate goal.

During the campaign, President-Elect Bush made statements supporting the
goal of doubling NIH, but currently there are too many unknowns to predict
whether those statements will be upheld.

Obviously Congressional and private sector research supporters need to
engage in a coordinated campaign to secure strong Administration support
for continuation of the doubling effort.

The conference report accompanying the 2001 Labor/HHS appropriations bill
contains the following language relating to Parkinson's disease research
funding:

NIH - Office of the Director

"The NIH has developed a five-year Parkinson's Disease Research Agenda.

"To carry out the plan, the professional judgment budget estimates call for
increases over existing Parkinson's research of $71.4 million in year one
(fiscal year 2001).

"The conferees strongly urge the Director to work toward implementation of
the research agenda and oversee coordination of all relevant Institutes,
including the National Institute on Neurological Disorders and Stroke, the
National Institute on Environmental Health Sciences, the National Institute
on Aging and others conducting Parkinson's research.

"The Director is requested to report by March 1, 2001 on the progress
towards implementation of the research agenda and to submit updated
professional judgment funding projections for subsequent years."

The urgency of our cause demands that we are not satisfied by anything
short of an $71.4 million earmark for year one of the research agenda and
additional language ensuring that all other PD research funding (estimated
by NIH to be $165 million in 2001) is allocated to high-priority
Parkinson's-focused projects.

In light of this exceedingly high standard, and the prevailing political
climate, securing the language we did is a significant accomplishment won
through sound strategy and relentless effort.

The Parkinson's Action Network is enormously grateful to every advocate
across the country who has sent even a single letter or made a single
telephone call to your federal legislators.

And the entire Parkinson's community owes a debt of thanks to the countless
individuals who did that and much, much more.

Your efforts paid off -- your voices were heard -- and you made a difference!!

This accomplishment was a true team effort, and lots of people deserve to
share the credit.

After congratulating yourself and your fellow advocates, we urge you to
take a minute to drop a note expressing your gratitude and continued
commitment to our Congressional supporters.

House Appropriations Chair Congressman Bill Young (R-FL) is chiefly
responsible for this year's conference report language, and he deserves our
most sincere thanks. Senators Tom Harkin (D-IA) and Arlen Specter (R-PA)
also helped mightily with the language.

Long-time supporter Senator Paul Wellstone (D-MN) provided his valuable
energy and support, as did Senators Thad Cochran (R-MS) and retiring
Senator Connie Mack (R-FL).

Each of you can assist in the follow-up effort by sending thank you notes
to the Members listed above, and by sharing the report language with your
Senators and Representatives.

Now is also the time to establish relations with newly elected Members of
Congress, or re-establish relations with your returning legislators, and
enlist their support for our legislative campaign.

It's never too early, or too late, to groom another Parkinson's champion!

Lastly, this update deals solely with the recently adopted conference
report language concerning Parkinson's research funded through the NIH.

This year also saw significant advances in Parkinson's research funding at
the Department of Defense, announcement of several major research advances
and, of course, the unprecedented explosion of media coverage and public
awareness coinciding with the launch of the Michael J. Fox Foundation for
Parkinson's Research.

The advocacy effort will not end until there is a cure, but take some time
over the holidays to reflect on this successful and memorable year.

Happy and peaceful holidays from the Parkinson's Action Network.

We thank you for your effort and support.


Michael Claeys, Senior Policy Coordinator
Parkinson's Action Network

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janet paterson, an akinetic rigid subtype parkie
53 now /44 dx cd / 43 onset cd /41 dx pd / 37 onset pd
TEL: 613 256 8340 SMAIL: POBox 171 Almonte Ontario K0A 1A0 Canada
EMAIL: [log in to unmask] URL: http://www.geocities.com/janet313/