DonAEt be discouraged. I just met with a Congressman who lamented that
eveeryones cause is a good one. He rerlated how a constituent had just visited
promoting a certain program that was targeted for cuts. If that prograrm is
cut his business will f
Remeember, the battle we are waging is for our very lives.
I juat recently returned from the ParkinsonAEs 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 oma
DonAEt be discouraged. I just met with a Congressman who lamented that
eveeryones cause is a good one. He rerlated how a constituent had just visited
promoting a certain program that was targeted for cuts. If that prograrm is
cut his business will f
Remeember, the battle we are waging is for our very lives.
I juat recently returned from the ParkinsonAEs 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 oma
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 milli
We struggled for many hours to come up with a plan which was recommended and
adopted. That planAEs key ingredients were simplicity, immediacy and this
list. The tenants of that plan were:
To identify 535 people throughout the country. Each was to monitor the status
of either a Congressman or Senator and coordinate lobbying efforts.
A preference that these people have electronic connectivity (E-Mail)
Represenatives of the Parkinson's Disease groups and their lobbyists will meet
regularly in DC and issue instructions/ strategy
A data base be maintained with input from the 535 and accessibility
I was going to give the names of the 535 to Kaye /Bernstein to maintain the
database
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 do
Here are somesuggested 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
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.
