iI have been asked by the American Parkinson Disease Association to post the
letter sent to Information & Referral Center Coordinators, Chapter
Presidents, and Advocates::
FROM: Paul C. Smedburg, APDA Washington Representative
DATE: 4 October 1996
RE: Morris K. Udall Parkinson's Research, Education, & Assistance Act
____________________________________________________________________________
__________
SUCCESS IN SENATE -- FRUSTRATION IN HOUSE
First, I want to congratulate the APDA staff, I&R Center coordinators,
chapters, support groups, concerned family members and friends who did so
much to contribute to the impressive APDA grassroots advocacy effort on
behalf of the Udall Bill. The overwhelming response to APDA mailings and
regional requests for action were always met with enthusiasm and urgency.
Whether you have visited your elected official(s) at home or in Washington,
D.C. walking the halls of Congress, wrote a letter, called Capitol Hill
offices, signed a group letter, mailed a postcard, attended a congressional
town meeting, spoke to other groups to encourage advocacy efforts, had your
relatives write etters and make calls, or placed either an article or letter
in your newspaper --remember your efforts made a difference.
*********************************************
The 104th Congress comes to a close today (10-4-96) and we can claim victory
in the Senate and absolute frustration with the House of Representatives.
The United States Senate, on September 25, 1996, in unanimous consent,
passed the Morris K. Udall Parkinson's Research Bill as a part of the
"National Institutes of Health Revitalization Act of 1996". The revised
version of the original Udall Bill preserved the important goals and essence
of the bill and slightly lowered the amount of money authorized for direct
Parkinnson's research from $100 million to $80 million for fiscal year 1997
and such sums for 1998 and 1999.
A case can also be made that if it had not been for dedicated APDA advocates
across the country, the Parkinson's community and those in Washington, D.C.
the NIH Revitalization Bill would never have made it to the Senate floor for
a vote. The week before the vote, Parkinson's advocates actively solicited
support for the NIH Bill because it was our best chance to get the Udall
Bill to the Senate floor. The effort in Washington was complemented by
Parkinson's advocates throughout the country calling the Senate leadership
requesting action.
The victory in the Senate was a direct result of a strong grassroots
campaign, the dedication of numerous individuals, including APDA
representatives, who came to Washington, D.C. and walked the halls of
Congress and the participation of friends who worked behind the scenes
advocating on our behalf and strongly argued to congressional leaders for
action on the Udall Bill. In the end, the Udall Parkinson's Research Bill
had 60 senate co-sponsors -- a clear bi-partisan majority of the Senate.
Unfortunately, the House of Representatives and more specifically the
leadership in the House Commerce Committee (Congressmen Thomas Bliley and
Michael Bilirakis) chose to ignore the will of a majority of the House and
their fellow committee members. The House Commerce Committee leadership
also chose to ignore solid scientific research potential, and the proposal
by Senator Kassebaum to get the House to accept the Senate version of the
NIH Revitalization Bill.
Apparently, there are three reasons why the House Commerce Committee
leadership chose not to act; reservations on their part to certain "aspects'
of the Udall Bill, opposition to earmarking or targeted funding for a
specific disease or disorder, and an objection by certain members concerning
fetal tissue research.
Their refusal to act was not due to a lack of effort by APDA support
groups, chapters, I&R Centers and others in the Parkinson's community. The
House leadership, committee leadership and House members were flooded with
phone calls, post cards and letters from across the country. Parkinson's
advocates also walked the halls and actively solicited and received support
for the Udall and NIH Bills. The grassroots effort was complimented in the
House, as it was in the Senate, by several friends who worked behind the
scenes advocating on behalf of the Parkinson's community.
IN BRIEF SUMMARY -- The Udall Bill received unanamous approval by the Senate
Labor Committee,to be included in the NIH Revitalization Bill. The U.S.
Senate, by unanamous consent approved the NIH Bil and the House of
Representatives decided to take no action. The Udall Parkinson's Bill must
be reintroduced in the 105th Congress to build upon our success and continue
our campaign to receive proper federal funding for Parkinson's research.
LET US NOT FORGET HOW FAR WE HAVE COME! -- In many respects our work during
the past two years was very successful. In the past three days, I have
talked to more than one hundred people; leaders of small and large APDA
groups, caregivers and concerned friends who now know the importance of
political advocacy. These individuals and many others are empowered and now
realize they can have an impact. The Udall Bill gave the Parkinson's
community a call for action. The recognition, by members of APDA support
groups and chapters, that political advocacy is an important and necessary
activity is itself a victory. Advocates walking the halls of Congress,
large urban and small rural APDA support groups, APDA chapters, family
members, and concerned friends all contributed to this successand building
process. Not many people thought we would have made it this far.
CONFIDENTLY, we proved these people wrong. We have built a strong foundation
from which to buildupon and make our voice heard.
In the next three months, dialogue with congressional leaders and the
administration will continue and strategies will be developed to build upon
our success in the Senate. We must also encourage even more active
participation and strengtthen our advocacy network.
Please call Paul Smedburg, APDA Washingto, D.C. Office, at 800-684-2732, if
you need an article for an upcoming newsletter or more detailed information
regarding the Udall Bill. You will receive a more detailed account of our
work on the Udall Bill.
WILL JOHNSTON 4049 OAKLAND SCHOOL ROAD
SALISBURY, MD 21804-2716
410-543-0110
Pres A.P.D.A. DelMarVa Chapter
63 Dx1991 Symptoms 1971
