LISTSERV 16.0 - PARKINSN Archives

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From: Kelly Abbett <[log in to unmask]>
To: "*Panlist (E-mail)" <[log in to unmask]>
Cc: "*Panmc (E-mail)" <[log in to unmask]>
Subject: Action Update from the Parkinson's Action Network
Date: Tue, 23 Mar 1999 16:23:46 -0500
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Parkinson's Action Network
Action Update - March 23, 1999

This Action Update includes new information about the 1999 PAN Public
Policy Forum and a letter that was sent to the Director of the National
Institutes of Health.


Representatives Come Together for Parkinson's

Marking another historic first in the fight to cure Parkinson's, Members
of the U.S. House of Representatives have formed the Congressional
Working Group on Parkinson's Disease.  The purpose of this bipartisan
group is to raise awareness among Members of Congress, their staffs and
the public on issues related to Parkinson's -- including increasing
federal funding for Parkinson's research and better directing its focus.
This informal group will work to promote legislation, monitor and
arrange briefings, and disseminate information.

In its first official action, the Working Group sponsored a
Congressional briefing on March 4 to inform Members and staff about the
state of Parkinson's research.  Titled "Parkinson's Disease: The Facts
and the Future Promise of Research," this informative and well attended
briefing included presentations by respected Parkinson's researchers Dr.
Curt Freed of the University of Colorado and Dr. Jay Schnieder of
Pennsylvania's Jefferson Medical College.  Also featured were Roll Call
Executive Editor and Parkinson's advocate Morton Kondracke and Network
President Joan Samuelson.  This briefing was the first in a series to be
sponsored by the Working Group.

Congresswoman Carolyn Maloney (D-NY), whose father was diagnosed with
Parkinson's last year, opened the briefing with impassioned remarks
about the tragedy of Parkinson's and the urgent need for additional
research funding.  Rep. Maloney, Co-Chair of the Working Group with Rep.
Fred Upton (R-MI), has brought tremendous energy and leadership to the
formation of this bipartisan coalition of Representatives.

Joining Maloney and Upton as founding members of the Working Group are
Vice Co-Chairs Lane Evans (D-IN) and Joe Skeen (R-NM), and Executive
Committee Members Mark Udall (D-CO), Tom Udall (D-NM) and Henry Waxman
(D-CA).  Additional members of the Group include Representatives William
Coyne (D-PA), William Delahunt (D-MA), Benjamin Gilman (D-NY), Sue Kelly
(R-NY), Connie Morella (R-MD), David Price (D-NC), Ronnie Shows (D-MS)
and Ted Strickland (D-OH).  Each of these Members deserve most sincere
thanks.

If your Representative is not listed above as a member of the Working
Group, contact him or her right away and urge them to join!  Interested
Representatives can contact Congresswoman Carolyn Maloney or Megan
Gordon at (202) 225-7944.


Dates Set for 1999 Public Policy Forum

The Network's Sixth Annual Public Policy Forum in Washington, D.C. is
scheduled for Sunday, June 27 through Wednesday, June 30 at the Hyatt
Regency Hotel on Capitol Hill.  Welcoming activists from across the
country and featuring updates on the latest scientific research,
intensive lobby training and opportunities to meet directly with
legislators, the Washington, D.C. Forum is the year's premier event for
the Parkinson's advocacy community.

To register for the 1999 Public Policy Forum, call the Network at (800)
850-4726.  There is a $125 registration fee which helps defer a portion
of the costs of materials, speakers, meeting rooms and some meals.

Room charges are $129/single, $154/double, $179/triple, $204/quadruple,
per room per night.  This is a discount rate applied to the block of
rooms reserved by the Network for attendees of the 1999 Forum.  Forum
participants are not required to stay at the Hyatt; however, as summer
is a popular season for tourists in Washington, pricing and availability
cannot be guaranteed at other hotels.

Room reservations can be made by calling the Hyatt at (800) 233-1234.
Call the Hyatt for reservations only, and specify that the reservation
is for the Hyatt Regency in Washington, D.C.  All registration fees and
room payments are made directly to the Network.

More information about the 1999 Forum will be available in the coming
weeks.  In the meantime, however, please do not hesitate to contact the
Network at (800) 850-4726 at any time with questions, comments or
requests.


House Members Send Letter to NIH Director

Twenty-six Representatives signed a letter to NIH Director Harold Varmus
stating their "strong support for significantly increasing funding for
research focused on Parkinson's disease."  Sixteen Senators sent a
similar letter to Dr. Varmus in February.

Spearheaded by Udall Act sponsors Congressmen Fred Upton (R-MI) and
Henry Waxman (D-CA), the letter expresses concern that funds NIH claims
are being spent on Parkinson's are actually paying for grants that are
"very tenuously related to Parkinson's disease."  Therefore the
cosigners urge NIH not only to increase funding for Parkinson's
research, but also ensure that those dollars support "research truly
focused on Parkinson's disease."

The Network applauds the efforts of Congressmen Upton and Waxman, and
all those who signed this important letter.  Please review the following
list of cosigners, and if your Representative is among them, please call
or write to show your appreciation for their support.


Cosigners of Letter to NIH Director Dr. Varmus

Fred Upton (R-MI)
Henry Waxman (D-CA)
Gary Ackerman (D-NY)
Tom Allen (D-ME)
Ken Bentsen (D-TX)
Jerry Costello (D-IL)
Lane Evans (D-IL)
Mark Foley (R-FL)
Barney Frank (D-MA)
Sam Gejdenson (D-CT)
Gene Green (D-TX)
Ralph Hall (D-TX)
Stephen Horn (R-CA)
Patrick Kennedy (D-RI)
Carolyn Kilpatrick (D-MI)
Joe Knollenberg (R-MI)
Jim Kolbe (R-AZ)
Carolyn Maloney (D-NY)
Constance Morella (R-MD)
Richard Neal (D-MA)
Jack Quinn (R-NY)
Adam Smith (D-WA)
Bart Stupak (D-MI)
Ellen Tauscher (D-CA)
Edolphus Towns (D-NY)
Ed Whitfield (R-KY)