RTK.NET Mail 156060 May 22 10:49:40 1996
Recently someone asked for a summary fo the Udall bill. I'm posting this
to the whole list since a number of people have been asking about it recently.
Please remember that this and other informative flyers and handouts are
available from the Parkinson's Action Network. It is laways a good idea to
make contact with PAN early on and keep them apprised of the responses you
get from your legislators.
S. 684 and H.R. 1462
I. The Strong Public Need for the Act
Parkinson's disease and related disorders afflict as many as 1.5 million
Americans, approximately 40
percent of whom are under the age of 60. The cause of Parkinson's is
not known at this time. What is
known is the cells producing dopamine (a neurochemical) inexplicably
degenerate.
Persons afflicted with Parkinson's suffer uncontrollable tremors, muscle
stiffness, and a loss of motor
function. Eventually, Parkinson's renders its victims incapable of
caring for themselves, placing a
temendous toll on the victims, their families and loved ones. It is
estimated that the disease costs society
nearly $6,000,000,000 annually. [NOTE--this is a very conservative
estimate, it was given as $26 billion in recent Senate testimony]
Yet, the federal program for Parkinson's research is grossly
underfunded. Parkinson's research receives
far less support than most other disorders, totalling only $26 per
patient in direct funding in 1994.
II. The Act's Proposal for Meeting the Strong Public Need
The Morris K. Udall Parkinson's Research and Education Act was
re-introduced on April 6, 1995, by
Senator Mark O. Hatfield (R-OR) and Congressman Henry Waxman (D-CA).
The bill will:
Authorize funding of $100 million to the National Institutes of
Health for Parkinson's research;
Expand basic and clinical research into Parkinson's, and coordinate
the research agenda;
Establish Morris K. Udall Parkison's research centers across the
country;
Establish Morris K. Udall Excellence Awards;
Establish a Parkinson's databank and information clearinghouse; and
Establish a National Parkinson's Disease Education Program.
III. Morris K. (Mo) Udall
The bill is named in honor of former Arizona Congressman Mo Udall who
served in the House from
1961-1990. Diagnosed with Parkinson's in 1978, Mr. Udall was forced to
retire due to Parkinson's
complications and is now living in a long-term hospital facility in
Washington. As Chairman of the then-
House Interior Committee, Mo was widely respected for the ability to
steer such controversial legislation
as the Alaska Lands bill and the Surface Mining bill through a
contentious Congress by being able to
charm, cajole and outwit his opposition. Congressman Udall contended
for the Democratic nomination
percent of whom are under the age of 60. The cause of Parkinson's is
for President in 1976 and, although he finished second to Jimmy carter,
he gained widespread respect and
affection for his grace and courage. His determination to live a full
and vigorous life even though
afflicted with Parkinson's has gained him further admiration.
IV. Contacts
Sue Hildick, Legislative Director, Senator Mark Hatfield (R-OR)
(202) 224-3753
Karen Nelson, Staff Counsel, Congressman Henry Waxman (D-CA)
(202) 225-3976
Jeff Myers, Legislative Assistant, Congressman Fred Upton (R-MI)
(202) 225-3761
Joan Samuelson, President, The Parkinson's Action Network
(707) 544-1994
For Sample letters and other helpful materials on legislative issues relating
to Parkinson's disease, especially the Udall bill, call the Parkinson's
Action Network at (800) 850-4726, the grassroots contact person is
currently Michael Claeys. Areas in which someone has been willing
to persistantly write, visit, and/or
call Senators and House members about the Udall bill and encourage others
to do so have have produced a great number of co-sponsors. In many cases,
it's not a lot of work to recruit co-sponsors. Try to set up a personal
meeting with your representative, sometimes you have to be pushy to get one.
It's most effective to have someone with Parkinson's at that meeting, and some
have also found it helpful to include a caregiver and a researcher as well.
It is always helpful to follow-up any response you get, even if it is a form
letter. PAN is trying to set up a network of grassroots advocates for
the Udall bill, so call them and let them know what you are doing. PAN may
also be able to connect you with others who are active in your area.
My most helpful contact has been Jim Cordy, an outstanding advocate from the
Pittsburgh area. You can email him at [log in to unmask] or call
him at (412) 521-9584. He has good suggestions for people lobbying fiscal
conservatives, and is very knowledgeable about the bill, what has worked, and
what we should be focused on trying to accomplish.
I hope this information will be helpful to you as you get involved in efforts
to get the bill passed. Please let me know if there is anything I can do
to help.
Sherri Cave
[log in to unmask]
