Greetings,
I'm sending this out to a list of names I have collected over the past
year or so. Some of you I know well. My apology for not being more
personal. Some of you I do not know at all, but have simply been
intrigued by something you posted on the PARKINSN List. Some tone in
your message that I thought indicated that you might want to
participate in this effort to cure Parkinson's Disease. My apology for
being presumptuous. Most of you I've had some contact with and I make
no apology.
I titled this message "Call to Arms". We need each of you and
all the additional support you can muster to provide a massive
grass roots demand to pass the Udall Bill. At stake is the
potential of cutting years off the time it will take to cure
Parkinson's Disease. I do volunteer work at the Neuroscience
Department at the University of Pittsburgh. I see each week
some new evidence that we are getting closer to that cure. I
wish all of you had that opportunity to see first hand the
progress that is being made. Then you too would share my
conviction that a cure is on the short term horizon, for I am not a
wide eyed optimist that sees cures around every corner but a very
pragmatic engineer trained to be skeptical of would be advances. I
wish that you could have heard Ole Isacson, from no less prestigious
a university than Harvard, testify at a Congressional hearing that
with roper funding he thought a cure was possible within five years,
if there was proper funding.
That is what this Call to Arms is about - Passing the Udall Bill in
1996. Most of us ordinary individuals cannot grasp the enormity of
$100 million. The budget for the primary research project at Pitt is
about $1million. That effort includes about 30 individuals of which 8
are PhDs. The Udall Bill would fund an additional 75 such research
efforts. Perhaps that puts it in more meaningful terms for you. The
impact on finding a cure for Parkinson's Disease of this type of
increased funding is staggering.
Below is an outline of the plan to accomplish this. This is the
unveiling of this plan. I'm encouraged by the cooperation from many
different groups and individuals that we have seen. Your comments are
welcome. Your help is essential.
Sincerely,
Jim Cordy
[log in to unmask]
412-521-9584
FAX 412-521-8237
1996 the Year We Pass the Udall Bill
GOAL: Pass the Morris K. Udall Parkinson's Research, Education,
and Assistance Act in 1996.
PURPOSE OF THE BILL: To increase federal funding of
Parkinson's Disease from its current $26 million/year to $100
million/year. To correct an inequity which has seen a
disproportionate share of funding go to other areas. To provide the
financial resources to speed the search for the cure. Scientists are
near unanimous in their belief that more is known about Parkinson's
Disease than any other neurological disorder, thus underscoring the
hope that such an infusion of funds will result in a cure.
BACKGROUND: Currently we have 26 Senators and 95
Representatives as cosponsors of this legislation (H.R.1462 /
S.684). Senator Hatfield, the sponsor of the bill in the Senate, took
note of the tremendous support mustered for this legislation in 1995
and feels that effort sets the stage for passage in 1996. Passage in
1996 is crucial as at least five strong supporters in the Senate
(Hatfield, Simpson, Simon, Pryor and Pell) have all announced they
will not seek reelection . Joan Samuelson, Parkinson's Action
Network, who herself has Parkinson's, has taken the cause of increased
research funding for Parkinson's Disease to the verge of enactment
into law by the U. S. Congress. She has accomplished this feat almost
single-handedly, but to finish the task, particularly in the
relatively short time frame of 1996, she needs help.
CAMPAIGN: We now have a coordinated national campaign. It has
the whole hearted support of the national Parkinson's charitable
organizations (APDA, NPF, and PDF), each of which has or will soon
make a mass mailing encouraging individuals to contact their
legislators.
STRATEGY: Call upon Support Groups, Chapters, researchers and
healthcare professionals to mount a grass roots campaign to inform
Congress of the plight and the promise of Parkinson's Disease
research:
1) First, targeting members of the Senate Labor Subcommittee with
particular emphasis on those who have not yet agreed to cosponsor
(Ashcroft-MO, Jeffords-VT, DeWine-OH, Gorton-WA, Coats-IN, Gregg-NH,
Abraham-MI, Harkin-IA).
2) Then identifying advocates in key geographic areas where
support has been missing (Los Angeles, Texas, Ohio, Florida,
North Carolina, Indiana and Virginia).
ADVOCATES: Advocates play a key role in keeping this whole
process going. With human nature being what it is, people need
personal encouragement. This personal contact is a vital role
of the advocates:
1) Meet with Support Groups, Chapters, healthcare professionals
and civic organizations to get the letter writing and/or phone
calls accomplished.
2) After hearing from their constituents, we must drive our message
home with personal contact with the Senators and Members of Congress.
My experience convinced me that if we have one person with Parkinson's
meet with every Senator and Representative we will easily pass this
bill. We have a compelling case and when presented personally the
overwhelming majority of legislators contacted have agreed to
cosponsor.
In the past we have relied on people stepping forward and these
people have been successful as evidenced by the 121 cosponsors. A
rudimentary analysis of the demographics of the House, however, shows
huge holes in our network representing large metropolitan areas or
states where we have had little or no activity. We must identify
advocates in these areas, train them, arm them with the facts, and
convince them that they can make a difference. Part of this effort
may be finding the funds to bring them to the Advocacy Forum in May.
Our goal is 300 attendees not 50. (Attached is a more detailed
discussion of the Congressional demographics).
TIMELINE: Overall the plan is to begin this year's legislative process
in the Senate where the Udall Bill currently has broader bipartisan
support. Specifically, the plan is to hold hearings in Senator
Kassebaum's Labor and Human Resources Committee and have the bill
reported out of committee by the end of March. Use the Udall Awards
dinner in April as the kickoff to passage in the full Senate by May.
Energize advocates from around the country at the Advocacy Forum in
early May. Employing grass roots support and individual contacts of
specific legislators to carry the momentum gained in the Senate over
to the House Commerce Committee chaired by Congressman Bliley and its
Subcommittee on Health and the Environment chaired by Congressman
Bilirakis. The target is to report the bill out of those committee by
summer recess at the end of July and to pass the bill in the full
House before they adjourn in early October.
CONGRESSIONAL LEGISLATIVE SCHEDULE: Below is the
schedule of when legislators are scheduled to be in their home
districts: February 2-25, March 30-April 14, May 24-27, June 29-July
7, Aug 3-Sept 3, October 4,Target Adjournment.
BI-WEEKLY CONFERENCE CALL: Joan Samuelson has instituted
an informational conference call to individuals who have surfaced as
leaders in this initiative. The basic premise of this call is to
disseminate information and coordinate activity. Each participant has
the responsibility to pass the word on to a network of other advocates
which they develop. This communication process is the glue that will
hold this effort together. Regular communication fosters the sense of
belonging to a team, with the incumbent loyalties and
responsibilities.
WHAT CAN YOU DO ? - Some people have said "I wish I could do
more." If we fail it will not be because of those who did all they
could. It will be because some who could did not. We need:
Advocates - in the areas mentioned above. The task is simple.
Encourage people to contact their legislators and encourage them to
cosponsor the Udall Bill. Meet with your Senators or Representative
and/or staff in their home district. Qualifications: Won't take no
for an answer.
Grass roots support - Write or call your Senators or Representative to
urge their support of the Udall Bill. Some have written one letter and
thought that was sufficient. If you or a loved one has Parkinson's
Disease, you should be writing a letter a week. Qualifications: Won't
take no for an answer.
TO VOLUNTEER:Call Dyann at PAN 800-850-4726 or
Jim Cordy 412-521-9584 E-Mail [log in to unmask]
