Do not be discouraged. I just met with a Congressman who lamented
that everyones cause is a good one. He related how a constituent had
just visited promoting a certain program that was targeted for cuts. If
that prograrm is cut his business will fail. I responded that I'm sure
having ones business fail was a terrible experience, but that when that
man got up tomorrow he would still have his health. I cannot say that
that myself as I have Parkinson's Disease. Millions of other Americans
will also awake tomorrow without their health because of some sinister
disease or illness. Upon returning home I wish I had added that
Parkinson's Disease is robbing me of my life, liberty and pursuit of
happiness, the very unalienable Rights set forth in the Declaration of
Independence. Let's apply the criterioon set forth by our founding
fathers when cutting funding. Does a program impact our life, liberty
aaand persuit of happyness.
Remember, the battle we are waging is for our very lives.
I just recently returned from the Parkinson's Action Network (PAN)
Advocacy Forum. The experiencd was both inspirational and
exhausting. PAN is working on a detailed plan to be widely published
so that all of us who want to help politically can "march to the beat of
the same drummer". Let me share with you a preview of what I think
parts of this plan will look like.
The Udall Bill battle will be fought on two fronts:
1 )Washington - where the factions within the Parkinson's community
must interact effectively with, the legislators and their staffs.
2)Home Districts - where a grassroots campaign must be waged.
Our success will be a function of how effective we are in both areas.
That in large part will depend on how well we communicate, both
between the Parkinson's Disease organizations and between Washington
and the Grass Roots. There are several million people, if you include
friends and families of those who have Parkinson's Disease that are
vitally interested if not highly motivated. They must be directed in some
manner to be effective. We struggled for many hours to come up with a
plan which was recommended and adopted. That plan's key
ingredients were simplicity, immediacy and this list. The tenants of that
plan were:
1)To identify 535 people throughout the country. Each was to monitor
the status of either a Congressman or Senator and coordinate lobbying
efforts.
2)A preference that these people have electronic connectivity (E-Mail)
3)Represenatives of the Parkinson's Disease groups and their lobbyists
will meet regularly in DC and issue instructions/ strategy
4)A data base be maintained with input from the 535 and accessibility
The reasoning for reliance on electronic communication was to do away
with the traditional pyramidal organizational structure. Conceivably
PAN could post information onto the PARKINSN list and reach the
majority of the 535. A goal could be to have donated pre 386 computers
to those individuals without connectivity now. Those computers don't
run Windows and arre sitting collecting dust by the hundreds. The
Parkinsn List in Toronto could then be our network.
Here are some suggested step by step guidlines. You should try to do the
following:
1. Call his district office to set up an appointment with him personally.
You may be required to speak with someone on his staff initially, but
persistent. Insist on a meeting with him. It is okay to take someone.
2. When you visit, tell your personal story. This has been found to be
the most effective
a) Ask if he knows anyone with Parkinson's.
3. Explain how important the Udall Bill is to people afflicted with
Parkins Disease. Increased funding is vital.
a) Show the Federal funding per person afflicted. To
demonstrate the current inequity.
b) Note that Neuroscientists believe a cure may be possible as
soon as 5 years
c) Suggest that the Udall Bill is cost effective. Spending
$100 million for 5-7 years to save $6 billion per year
which PD costs society
4. Ask him to co-sponsor the Udall Bill. A general statement
supporting he issues is not sufficient. If he agrees to co-sponsor, ask
him to contact Henry Waxman's office as soon as possible so he can be
officially signed on.
5. Also, ask him to prevent proposed cuts in the NIH budget.
Neurological research in all fields is very important. Especially in
Parkinson's Disease where a cure is imminent.
6. After the meeting, write a letter to him, again, asking for or
confirming his co-sponsorship.
7. Call his office every week or two asking his aide where he stands on
the Udall Bill Inquire if they are getting corrrespondence from others
supporting the NIH.
8. Ask everyone you know to visit, write or call his office. We
discovered is just as effective as a letter. So if people are reluctant to
write, call -- give them the number.
Anyone interested in becoming one of the 535 who monitor Congressmen and
Senators, contact me and I'll get you in touch with the appropriate
people in your state.
Jim Cordy
Pittsburgh
[log in to unmask]
