>Minutes from Udall Advocates Steering Committee Conference Call
>of Monday, December 1, 1997
>
>The Udall Advocates Steering Committee, which includes representatives of
the three national Parkinson's organizations and grassroots advocates, held a
>conference call Monday, December 1, 1997 to discuss, among other things,
the development of a coordinated strategy for seeking full funding of the
recently passed Udall Act.
>
>Participating in Monday's call, which was chaired by Jim Cordy, were:
>
>Larry Hoffheimer and Bill Turenne of the NPF's Washington office
>Mike Claeys of the Parkinson's Action Network
>Robin Elliott of the Parkinson's Disease Foundation
>Carol Walton
>Bob Martone
>Ken Aidekman and
>Martin Tuchman
>
>Absent were:
>
>Paul Smedburg of the American Parkinson's Disease Association and
>Perry Cohen
>
>On the agenda for discussion was:
>
>· The development of a coordinated Udall strategy,
>· A status report on a multi-organizational advocacy video and
>· The future of the PD community's interaction with NIH.
>
>The meeting began with a discussion stemming from a recent meeting some of
the Steering Committee members had with Former NJ Congressman Dick Zimmer
regarding his friendship with Congressman Jim Greenwood (R-8-PA) who has
recently replaced Congressman Paxon as Chairman of a Republican strategy
group. This is a Republican Leadership position (Gingrich, Armey, et.al.).
Former Congressman Zimmer is prohibited by law from lobbying his former
colleagues until Jan. '98, but he indicated that when it was appropriate to do
so, he would ask Rep. Greenwood to make a plea to the leadership for Udall
funding to appear on Chairman Porter's 'mark' (or mark-up.)  This is an
exciting and hopefully effective connection that was heretofore unknown.
>
 Next was a brief discussion of a fax that Robin Elliott sent to the
participants that included excerpted quotes from videotaped remarks made by
the U.S. Health and Human Services Secretary, Donna E. Shalala.  Her remarks,
which lauded the record of the Clinton Administration on issues related to
Parkinson's disease and praised the efforts of the Parkinson's community in
getting the Udall Act passed, were presented at PDF's Benefit Dinner-Dance
held on December 3, 1997.
>
>If you would like a copy of the Secretary's remarks, feel free to contact
Robin Elliott at PDF, or most any other member of the Committee.

We all agreed to follow up with Secretary Shalala's offices urging her to
>support the inclusion of funding for the Udall Act in the President's FY'99
>Budget request.
>
>In another effort to gain funding for the Udall Act, Senator McCain's
office is in the process of producing a letter to be distributed to each of
the 95
>Senators who voted in favor of the Udall Act when it was considered as an
>amendment to the Senate version of the Labor HHS Appropriations Bill.  The
>letter will urge each member to co-sign a letter that will ultimately be
sent to the White House requesting the inclusion of Udall funding in the
>President's Budget request.  Congressman Upton is also producing similar
>letters that will be distributed to House Udall cosponsors that will go to
>both the President and Labor HHS Appropriation Subcommittee Chairman,
>Congressman John Porter (R-10-IL).
>
>Jim Cordy asked Bill Turenne, Mike Claeys and Paul Smedburg to coordinate
>efforts to focus advocates letter, phone and fax campaigns on their
>Representatives and Senators thanking them for their previous support and
>urging them to add their signature to Sen. McCain and Rep. Upton's letters.
>Letters to the White House were also discussed and deemed worthwhile if in
>sufficient volume.
>
>Another agreed upon strategy to assure Udall funding is to encourage
>advocates, especially those whose Representatives and Senators serve on the
>House and Senate Appropriations Committees, to send letters of appreciation
>for their support.  An even more effective effort would be to write Letters
to the Editor of the local or state newspapers (much like Jim Cordy did and
>posted on this list).
>
>Following the appropriation strategy discussion, a brief report was given
by Martin Tuchman and Mike Claeys on the progress of an advocacy video being
>developed to assist with presentations to congressional staff and members.
>The video is being produced by PAN with financial assistance from some of
the other national organizations.
>
>Also discussed were plans to refute NIH claims that there is insufficient
>"good" PD research to fund by encouraging the submission of more R-01 grant
>proposals in the near future.  This could be accomplished by notifying
>established researchers of the likelihood of additional funds for PD
research on the way.  An idea for the national organizations to provide what
were
>called "seed grants" to scientists in order to gather pilot data for the
>submission of additional R-01s was also raised.

In conclusion, the conference call was a very productive effort by all
involved to coordinate efforts and develope an agreeable strategy.  I hope
that this information is useful to all of you.

Following is a list of things that you, in the grassroots, can do to assist in
this effort.

1) If you have not been doing so already, write, call or fax your
Representative and your two Senators (if they have been supportive) and simply
thank them for all that they have done.  Letters to the Editors of local
papers praising their efforts in gaining passage is probably the most
effective way to publicly show your appreciation.

2) Write, call or fax the White House and thank the President for doing his
part to see the authorization bill passed.  Take the opportunity to request
that he include Udall funding in his FY'99 Budget request.

3) When (and not before) you receive word from either Mike, Paul or myself
that McCain or Upton's letters have been released for circulation, write,
call, or fax your representatives in Congress and urge them to co-sign it in
support.  Remember, McCain's letter will go only to the Senate, and Upton's to
the House.  As soon as we receive a copy of either of these letters, they will
be posted on this list for you to follow up with.

4) Most importantly, please communicate these suggested steps to other people
in the PD community who don't have access to this list.  Also, if possible,
send copies of your letters to either Mike, Paul or myself so that we can
report on the progress.

We are entering the next (and hopefully final) stage of securing the much
needed funding that the Udall Act outlines.  Your participation is more
important now than ever before.  The Steering Committee will continue to
communicate regularly and will be working together with your best interests in
mind.  Let's remember that no matter what, we ALL share the same goal...curing
Parkinson's disease.

Thanks in advance for your efforts,

Bill Turenne, Jr.