I am passing on information from the AOL PD BB.
 
Morris K. Udall Parkinson's Bill Introduced.
 
 On July 19th Senator Mark O. Hatfield (R-OR) and Congressman Henry A. Waxman
(D-CA)  introduced the Morris K. Udall Parkinson's Research, Education and
Assistance Act of 1994.  Cosponsoring the bill is a bipartisan group of
members including Senators Alan Simpson (R-WY) and Paul Wellstone (D-MN), and
Representatives Fred Upton (R-MI) and Bill Richardson (D-NM).
 
The Morris K. Udall Act will:
Expand basic and clinical research into Parkinson's, and coordinate the
research agenda;
Establish Parkinson's research centers across the country;
Establish Morris K. Udall Excellence Awards and feasibility study grants;
Establish patient and family registries;
Establish Morris K. Udall Health Professions training grants; and
Establish a National Parkinson's Disease Education Program.
 
 At ceremonies marking the introduction of the Udall Bill, Senator Hatfield
spoke of "Mo Udall's brilliant career in Congress ... cut short by
Parkinson's Disease.  Diagnosed in 1980, Mo struggled with the neurological
decay and decreased motor skills of the disease for years before he resigned
from Congress in May of 1991."  Hatfield continued, " The great tragedy of
Parkinson's disease is that we need not suffer this enormous loss. There is
tremendous potential for major scientific breakthroughs in the prevention and
treatment of Parkinson's.  Scientists have recently discovered evidence of
genetic and neurotoxic links to the causes of the disease and new treatments,
involving neural growth factors, tissue implants and genetic engineering."
 The Congressmen present spoke of their personal experiences with
Parkinson's.  Senator Alan Simpson recalled the strength and humor that his
father employed to cope with Parkinson's.  Senator Paul Wellstone emotionally
affirmed  his committment to Parkinson's research while acknowledging that
both of his parents suffered from the disease.  Congressman Fred Upton was
visibly moved as he recalled the experience of his uncle's battle with
Parkinson's.
 Anne J. Udall, Ph.D., Chair of the Parkinson's Action Network (PAN) and
daughter of Mo Udall said, "This bill acknowledges the great need and
tremendous potential for a Parkinson's research breakthrough.  We are deeply
grateful to Senator Hatfield, Congressman Waxman and the other co-sponsors
for this major step forward."
 "Parkinson's has not had a significant breakthrough in treatment since the
development of L-Dopa in the 60's," said Joan Samuelson, President of PAN.
"Scientists tell us a major breakthrough and even the cure can be found
before 2000 - - if their research is supported.  Unfortunately, Parkinson's
has been the stepchild of the federal budget.  With this bill, the neglect of
our community will begin to end."
 
Also in attendance were representatives of the major national Parkinson's
organizations;  Nathan Slewett of the National Parkinson's Foundation, Mario
Esposito and Frank Williams of the American Parkinson's Disease Association,
Margot Zobel representing the Parkinson's Disease Foundation and Dr. William
Langston of the Parkinson's Institute.  These organizations and many other
local Parkinson's groups have endorsed the bill.
 Sixty Parkinson's advocates from all over the United States were also in
attendance while participating in the first PAN Public Policy Forum.  At the
forum they were briefed by experts in lobbying strategy, Congressional
legislative process and political media.  Sessions included role-playing in
preparation for meetings with members of Congress.  Joan Samuelson conducted
the agenda at the three day forum which featured talks by Senator Wellstone,
Anne Udall and Congressman Henry Waxman.  Soon after the press conference
Parkinson's advocates met with their Senators, Congressmen and respective
legislative aides to enlist support for the Morris K. Udall Bill and the
Harkin/Hatfield Fund for Health Research.  The forum concluded with a
strategy session which addressed the need for better communication and
organization amongst Parkinson's advocates.
 
-Ken Aidekman
 
P.S.  Media experts at the PAN forum suggest that Parkinson's advocates can
increase public awareness by informing their local newspapers, radio stations
etc. of important developments, such as this, through press releases, letters
to the editor and direct discussions with media editors.
 
Regards,
Alan Bonander ([log in to unmask])