Mike,
A timely and informative update.  I am certainly aware that you can't
include everyone who needs thanked, however, high on my list are
Pennsylvania Senator Arlen Specter and NINDS Director Dr. Fischbach.

Jim Cordy


> -----Original Message-----
> From: Parkinson's Information Exchange Network
> [mailto:[log in to unmask]]On Behalf Of Mette Adams
> Sent: Tuesday, November 16, 1999 8:47 PM
> To: [log in to unmask]
> Subject: Parkinson's Action Network Update
>
>
> The following is a message from Michael Claeys, Policy Coordinator for the
> Parkinson’s Action Network.
>
> With the United States Congress expected to adjourn by Thanksgiving, it is
> time for an update of legislative matters pertaining to
> Parkinson’s disease.
> Some of the topics covered in this message will be discussed in greater
> detail in future postings, and as always, questions or comments about
> legislation, advocacy or any Parkinson’s-related matters can be
> put directly
> to the Network by calling (800) 850-4726 or sending email to
> [log in to unmask] <mailto:[log in to unmask]>.
>
> 1999 has been a very successful year for the Parkinson’s advocacy
> movement.
> Parkinson’s advocates everywhere need to know that all of the legislative
> accomplishments are built on the foundation of grassroots
> advocacy.  Members
> of Congress are educated, inspired and motivated to act by the tireless
> efforts of community advocates.
>
> Everyone who contributed to the cause - from writing a single
> letter or post
> card, to meeting repeatedly with a legislator or staff person, to offering
> financial support - should take pride in this year’s successes.
> The Network
> thanks you for all your hard work, and reminds you that it’s also time to
> thank those Members of Congress who have supported the Parkinson’s
> legislative effort.
>
> FY2000 Labor/HHS Appropriations Bill
> As one direct result of this year’s intense multi-faceted advocacy effort,
> the fiscal year 2000 Labor, Health & Human Services and Education
> (Labor/HHS) Appropriations conference report contains the following
> language:
>
> “NIH is expected to consult closely with the research community,
> clinicians,
> patient advocates, and the Congress regarding Parkinson’s research and
> fulfillment of the goals of the Morris K. Udall Parkinson’s Research Act.
> NIH is requested to develop a report to Congress by March 1, 2000
> outlining
> a research agenda for Parkinson’s focused research for the next
> five years,
> along with professional judgment funding projections.  The NIH Director
> should be prepared to discuss Parkinson’s focused research planning and
> implementation for fiscal year 2000 and fiscal year 2001.”
>
> For the first time ever, Congress is asking the NIH to develop a research
> agenda - with cost projections - aimed at finding a cure for Parkinson’s
> disease.  This dramatic new request, and the March 1st deadline,
> has created
> a sense of urgency at the NIH, in Congress and throughout the Parkinson’s
> community.
>
> The Parkinson’s community owes a great debt of gratitude to Florida
> Congressman Bill Young, Chairman of the House Appropriations
> Committee, for
> his strong leadership in seeing this language included in the final
> Labor/HHS conference report.  Individuals and support groups in the Tampa/
> St. Petersburg area - and throughout the country - are encouraged
> to contact
> Chairman Young to express our thanks.
>
> The Honorable C.W. (Bill) Young
> 2407 Rayburn Building
> Washington, DC 20515
> (202) 225-5961 - voice
> (202) 225-9764 - fax
>
>
> The Labor/HHS conference report is anticipated to also include a massive
> $2.3 billion overall increase for NIH, bringing its 2000 budget to nearly
> $18 billion.  This additional funding provides the NIH with sufficient
> resources to increase its Parkinson’s research effort by the $75
> million the
> community has requested throughout the year.   In conjunction with the
> development of NIH’s March 1st report to Congress, the
> Parkinson’s community
> will continue to work with both Congress and the NIH to see that an
> additional $75 million is indeed spent on Parkinson’s-focused research.
>
> Department of Defense Parkinson’s Research Program
> The Army’s Neurotoxin Exposure Treatment Research Program (NETRP), which
> focuses largely on Parkinson’s disease as the model for studying
> the effects
> of environmental toxins on neurodegenerative disorders, was slated to
> receive no funding for fiscal year 2000.  This would have been a major
> setback for a significant portion of the federal investment in Parkinson’s
> research.
>
> Once again, an intense multi-faceted advocacy effort succeeded in securing
> $10 million in the FY2000 Defense Appropriation bill.  This is a
> big victory
> for the Parkinson’s community, and it could not have happened without the
> help and leadership of two important Members of Congress.  Southern
> California Congressman Jerry Lewis, Chairman of the House Defense
> Appropriations Subcommittee, was instrumental in seeing the
> additional funds
> were available.  Mississippi Senator Thad Cochran, a high-ranking
> member of
> the Senate Defense Appropriations Subcommittee, also played a key role
> ensuring the funding was retained during House - Senate negotiations.
> Advocates in Southern California, Mississippi and around the country are
> urged to contact Chairman Lewis and Senator Cochran to express the sincere
> gratitude of the Parkinson’s community.
>
> The Honorable Jerry Lewis
> 2112 Rayburn Building
> Washington, DC 20515
> (202) 225-5861 - voice
> (202) 225-6498 - fax
> www.house.gov/jerrylewis <http://www.house.gov/jerrylewis> - website
>
> The Honorable Thad Cochran
> 326 Russell Building
> Washington. DC 20510
> (202) 224-5054 - voice
> (202) 224-9450 - fax
> [log in to unmask] <mailto:[log in to unmask]> - email
>
>
> These Congressional leaders and all supportive Members of Congress deserve
> to hear the appreciation of the Parkinson’s community just as
> loudly as they
> heard the appeals and requests.  The community will need the leadership of
> Senator Cochran and Congressmen Young and Lewis (and others!)
> next year and
> beyond, so it’s important to recognize their work on our behalf.
>
> And take a moment to thank your fellow advocates.  Even though the cure is
> yet to come, the Parkinson’s community has come a long way in a
> short period
> of time - and the community could only have done so by working together.
>
> The Network will continue to provide updates and analysis of this year’s
> legislative accomplishments, as well as forecasts for the coming year - so
> please stay tuned and involved.  You can join the Network’s free mailing
> list and sign up to receive other advocacy-related materials by calling
> (800) 850-4726 or emailing [log in to unmask]
>