Below is a table of regional coordinators that we (me and some advocate
associates) have pulled together.
I have e-mailed it to all of those with e-mail. Margaret will fax it to
those who don't have e-mail. She will also shortly get everyone a listing
of people who have expressed some (?) interest in contacting their
Senators and Representatives. Your job, if you decide to accept it, is to
organize those contacts and any other resources you might have (such as
support groups). THE IMMEDIATE TASK IS TO CONTACT THE MEMBER OR THEIR
HEALTH LEGISLATIVE ASSISTANCE AND URGE THEM TO BE AN ORIGINAL COSPONSOR THE
NEW UDALL BILL. You can call the Capitol switchboard toll free and ask for
any Senator or Representative (800-962-3524). If they are willing to
cosponsor, have them get in touch with the offices of one of the following:
Senator McCain
Senator Wellstone
Congressman Upton
Congressman Waxman
This reintroduction should happen in a week or so. WE DON'T HAVE A LOT OF
TIME.
Some of you I have discussed this with, others are getting this out of the
blue. If you feel you can't handle this pleased contact me. This is a
first shot and done in a hurry. We can make whatever changes need to be
made. The important thing is to get moving. There are many dedicated
capable advocates who are not designated as regional coordinators in this
table. Not to worry, we have plenty to be done. If you are not on this
list and want to help one of the coordinators organize, give them a call.
There are some holes in the network. If anyone has contacts in those
areas, please let me or Margaret know.
The message to those representing us in Washington should be short and
sweet. I recommend the following pitch:
Parkinson's this a devastating, degenerative disease not just a minor
tremor.
Funding for Parkinson's research has woefully lagged behind other disease
groups. This bill would raise research funding from $24 million spent in
1994 to $100 million per year
Neuroscientists uniformly agree a cure or new effective treatment is near.
Curing Parkinson's would result in tremendous economic benefits estimated
to be $6--26 billion.
At a time when we are trying to cut the budget, here's a great
opportunity.
Last year we had 62 Senators and 248 Representatives as cosponsors. We
ran out of time not votes.
THE CLOCK IS TICKING for those with Parkinson's. We get worse every day.
We want this legislation passed. We are running out of time.
After this bill gets introduced, we want to make sure someone or group
visits EVERY Senator or Representative in their district. This should be
coordinated with a letter writing campaign.
Besides working with the local offices, call and develop a rapport with the
Washington legislative assistance in charge of health issues for your
Congressman and Senators.
A small group of dedicated advocates (35--40) have gone to Washington the
last several years and have had tremendous impact. This year we want
several hundred to go to Washington. Encourage those in each of the
districts to start making plans and raising funds so that someone from each
district can go to this years Advocacy Forum.
Some may feel overwhelmed. This is not difficult. The major requirement
is DEDICATION AND PERSISTENCE. Keep knocking on the door and they will
open it. My wife and I have visited the offices of over 40 Senators and
Representatives. They are interested in what people from their districts
want, particularly if they are motivated enough to keep knocking at the
door. The point we must drive home is PARKINSON'S IS DIFFERENT FROM OTHER
DISEASE GROUPS IN THAT A CURE IS CLOSE. FUND PARKINSON'S RESEARCH ON A PAR
WITH OTHER DISEASE GROUPS AND REAP TREMENDOUS BENEFITS IN REDUCED HUMAN
SUFFERING, SCIENTIFIC KNOWLEDGE APPLICABLE TO OTHER DISEASES, AND ECONOMIC
SAVINGS.
Jim Cordy
Pittsburgh
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