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 wi
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
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 m
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:
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 hav
Parkinsn List in Toronto could then be our network.
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 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.
