In a message dated 96-10-05 00:45:08 EDT, you write:
>)
THIS MESSAGE RESPONDS TO: the above captioned memo. I feel that letters from
persons of other countries can impact some congressmen. My experience is,
people are receptive to what gets their attention regardless of traditional
or professional standards, self imposed or not. People are people - and our
Senators and Representative aren't robots - The game is INFLUENCE and
CONVINCE the reps to decide to support the bill.All stimulous is helpful.
Every individual has differant buttons. We've got to keep pushing ALL the
buttons, so try, try, try. If anyone will tell us no - let it be the federal
reps say it. But don't impose a no on our own allies - be creative, try
something then something else, until it works ..this just might be the button
to push! If you're from another country and you write, and you get a "NO"
response, well you're not being treated any differant than us U.S. citizens
that have been working on the bill. So many doors have been slammed in our
face, but then.... they eventtually started opening. Remember, you've gotta
step out under the clear sky to catch the miracle. Don't stay under the porch
for fear of the rain.
THIS MESSAGE: is lengthy
IT WAS WRITTEN FOR: any readers from other
countries (and the U.S.) interested in helping us
in the U.S. to pass the "Udall Bill" or it's like -
January 1997
PURPOSE OF THIS MESSAGE: According to
my personal perspective, this is my effort to
1. Explain why we understand that help
from our friends in other countries, can
make the differance.
2. Request assistance
3. Thoughts of help needed and possible
ways to help in addition to writing to elected
officials.
..
1. We know countries can help one another:
"Yankee Go Home !" is a chant we in the U.S. are all too familiar with. It's
not pleasant, but
most of us will admit we know that in some cases, we've deserved it - yet, in
other cases we
deserved better. Either way, we continue poking in "other countries
business", and I'm
guessing it's because we know we can trigger change. I feel we can never take
over the
needs of other countries, but again - we know we have helped citizens of
other countries with
their efforts for human rights, economy, social change, quality of life and
relief of sufferring.
Some of us in the states are familiar with the sometimes justified grumblings
some of our
citizens "why don't we take care of our own before we go giving our resources
to others in
other countries?" Again, I believe that's because we've tasted the sweetness
of the ability to
influence change. and we recognize that positive changes in the world affects
us and our
future. Other countries can trigger change in the U.S. too!
2. Please don't shy away. We need your help.
There is no recipe for how you can help us from other countries, but there
really hasn't been a
recipe for us here in the states - to help ourselves either, so creativity
is welcomed!. We
need your help. I'm sure so many others would feel like me - very grateful
for that help.
3. problems & what can you do?:
The Parkinsons Action Network is working now and will soon issue their PAN
Newsletter to persons on their mailing list, and they will soon be sending
PAN ACTION ADVISORIES to persons that have identified themselves to PAN as
volunteer advocates. Send an E-mail to PAN telling them you want to be added
to both lists - their E-mail address is [log in to unmask] If you have
trouble E-mailing to them, send me your stuff, I'll forward it. Give your
name, snail mail address, E-mail address. If you feel that you might have
something that ould be of special help let them know that too ( example: You
have a movie star friend that can help spread the word about PD (not just
about the Udall bill), or you are a researcher in neuroscience, or you have
the means to make slogan pins to sell/give for people to wear, or you have a
support group that wants to help, or you have an idea that might help,
...etc.) PAN gives us sample letters, technical assistance/literature for
learning the U.S. legislative system, etc. Joan Samuelson is the President,
Brad Udall (Mo Udall's son) is the director, and Mike Claeys is the
political advocacy Aide (I don't think I have his title right, but he is
super & he receives the E-mail). Here's their contact info:
PARKINSONS ACTION NETWORK (PAN)
822 College Ave., Suite C
Santa Rosa California 95404
PHONE (707) 544-1994
FAX (707) 544-2363
Washington D.C. phone (202) 628-2079
E-MAIL [log in to unmask]
You and others of course will surely have better, more effective ideas , and
we need that. But more so - we need the application of those ideas.
The U.S. has enough persons in the U.S. Parkinsons community to have demanded
the passing of the Udall bill. (The U.S. Parkinsons community consists of one
and one-half million
persons with the disease PLUS their children, sisters, brothers, doctors,
neighbors,
employers, churches, etc. that care about us). But the truth is, only a mere
fraction were
actively involved. And it showed.We did not have at least one advocate
citizen per each of
the 50 states, nor did we have at least one "active" advocate per
congressional district, and
we surely didn't have groups of at least 50 visit each representative of
their own state. With
1.5 million, we have the power, but we haven't been able to harness it. Like
a wild horse, it's
power in great - but the horse needs to be harnessed to direct that power to
be of help to us..
Our most successful means of communicating to reach our Parkinsons community
has been
this PARKINSN LIST, and the newsletter of the PARKINSONS ACTION NETWORK
(PAN). Only recently did most national Parkinsons private non-profit agencies
join us with
strong support in their newsletters. But that's not enough for a country this
size. Too many are
not in our reach. We've touched many, but we haven't grasped their ACTIVE
COMMITMENT to do what they can/should do. We're dealing with people who need
motivation, information, energy, basic skills, and the means to recruit and
retain active
commitment from others. We need to be able to help these people gather in
masses (and lord
knows it's hard enough to transport a PD'er to a doctor's visit!) But our
means to do that has
been sparse.. So the news stays amongst the same people - outreach is
difficult. E-Mail is
great, but it's not reaching the 1.5 million either.
We need funds to transport the key advocates to the various states, to visit
many differant
towns and cities. To speak to Doctors so they can get involved and get their
patients
involved. We need to gather in their town's meeting centers - in their
territory, to convince
them to join the bandwagon, and we need to follow-up to help our little spark
survive to a
flame to get the citizens of ezch state working with a sense of urgency, I
can go on and on,
but I hope I've got the idea across!
Specific list of how you can help:
. FUNDRAISING - The Parkinsons Action Network is our political network. It
needs money to help network the masses. We need money to pay for those who
can't afford
to travel across the country or across their state. We need to cover costs
for newsletters,
mass mailings, long distance calls, office supplies, etc. You can help by:
asking your support group to plan now to sponsor the trip of at least
advocate from their
home state to the Washington D.C. office
. SPONSORS - sponsor the trip of one current "core" advocate through PAN,
of
one state to travel to another state where we don't have strong advocacy. The
person you
sponsor could travel to each major city of that state to recruit advocates.
. MEDICAL PEERS - initiate a "peer contact". We can give you the contact
info of
neurology clinics in differant cities across our nation, that haven't been
contacted. Write to
them, identify the names of neurologists, nurses, technicians and researchers
there. Identify
persons with similar positions in your country and ask them to help by
writing to those in like
poitions in the states to encourage their connection to PAN, etc.
. FIND THE PATIENTS - The U.S. does not have a national registry of
Parkinsonians or their affected families. We need to contact these patients
with newspaper
ads, or mailings to each individual nursing care home ( we can give you many
many
addresses). If we can find the patients in the nursing homes with PD. we can
reach their
families. It sounds far fetched, but one state director of liscensed care
facilities told me the
Alzheimers advocates did that and now they see major attention (compared to
before) given
to Alzheimers at the state and federal levels.
SUPPORT GROUPS - we have so many support groups but so many don't view
this as a priority. They'll probably respond to a letter from someone in
another country better
than they have hearing from us! Write and tell them why you think they should
get busy. write
to a group each month encouraging their membership's invfolvement and support
for our
movement. Try to establish some enthusiasm and retain their involvement.
NEWS - write or call international news publications. Tell them you want to
hear/read more about what the U.S. is doing about the federal research
efforts for PD.
I'll ramble forever, so I'd better stop here.
Maryhelen
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copy to PAN
