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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] >