Here is some information about the network:
Parkinson's Disease
In Parkinson's disease, cells that produce the neurochemical dopamine
degenerate, causing tremor,
muscle stiffness and loss of motor function. Medication masks some symptoms
for a limited
period, generally four to eight years in most victims, but begins causing
dose-limiting side-
effects. Eventually medications lose their effectiveness, and in the final
stages of the disease the
victim is unable to move, swallow or speak. Although the cause is still
uncertain, environmental
toxins are a suspect.
The Cost
the National Institutes of Health estimates that between 500,000 and
1,500,000 Americans are
afflicted with Parkinson's, with 50,000 more diagnosed each year.
Approximately 40% are under
the age of 60, effectively removing them from the productive work force.
Unlike many other
deadly ailments, Parkinson's victims remain alive but incapacitated for many
years, sometimes
decades, requiring a similar number of family members to be diverted from the
work force by
their role as caregivers.
As a result, PD is estimated to cost the U.S. $6 billion a year in
health-related expenses, in direct
disability-related costs and lost productivity.
The Mission
The Parkinson's Action Network (PAN) was founded in 1991 to provide a
unified, national voice
for the Parkinson's community and to promote a level of research support
sufficient to produce
effective treatment and a cure before the end of the decade. This has
required:
l Developing an informed and effective grassroots network, involving
individuals
afflicted with the disease, their families, Parkinson's foundations,
support organizations
and interested scientists.
l Increasing public awareness of Parkinson's disease and its impact on
individuals, on
health costs, and on the country as a whole.
l Working to strengthen the Parkinson's research program conducted by
the National Institutes of
Health, through monitoring of the program and relationships with key
officials and staff of NIH
and the several Parkinson's related institutes.
l Working with Congress and the Clinton Administration, directly and
through grassroots
advocacy, to increase their awareness of the needs of the Parkinson's
community and the impact
of their decision-making on that community.
In July of 1994 the "Morris K. Udall Parkinson's Research and Education Act"
was introduced in the Senate
and House by a bipartisan group of sponsors. This legislation authorizes an
expanded and aggressive
Parkinson's research program. The bill is scheduled to be reintroduced in
the early days of the 104th
Congress.
Here is the sample letter:
SAMPLE LETTER TO CONGRESS
Date
The Honorable ____________________, M.C.
United States House of Representatives
Washington, DC 20515
OR
The Honorable ____________________
United States Senate
Washington, DC 20510
Dear Representative/Senator _________:
I/we seek your support for an action which will benefit the Parkinson's
community's great need for
increased research support. I/we ask you to co-sponsor the Morris K. Udall
Parkinson's Research and
Education Act. The bill was first introduced in the Senate and House on July
19, 1994 by its principal
sponsors, Mark Hatfield and Henry Waxman. They plan to reintroduce it early
in the 104th Congress.
I [my husband/wife/parent etc.] suffer from Parkinson's disease, a
progressive neurological disorder
that destroys brain cells controlling motor function. Available treatment
only partially alleviates the
resulting stiffness, tremor and slowness of movement. Eventually it leaves
its victims unable to walk,
to talk, even to move. [Revise for your personal story if you wish]
Parkinson's is a devastating disorder, and financially cripples our nation:
$6 billion in direct and
indirect costs per year. Meanwhile, U.S. support for direct Parkinson's
research currently amounts to a
mere $30 per year per patient, which is far less than most other diseases
receive.
This is unfair to the Parkinson's community, and it ignores a tremendous
scientific opportunity.
Scientists say they have the potential for major treatment advances, and
maybe even a cure of
Parkinson's, in this decade. But this will not happen without adequate
research.
The Udall bill would authorize the necessary expansion of Parkinson's
research through strengthening
of the NIH research effort, establishment of a series of Parkinson's research
centers nationwide,and
other programs including Morris K. Udall Research Excellence Awards and
feasibility study grants.
Please do not allow our community to be ignored any longer. To restore our
hope, and eliminate a
huge economic burden on our government and economy, we ask that you add your
name as a co-
sponsor of the Udall bill.
Thank you for your attention. Please respond at your earliest convenience.
Sincerely,
(Your name address and phone number)
Please send me your street address so I can put you on our mailing list. I
will gladly mail you further information about the Network or the Udall bill.
Sincerely,
Sheila Heath
PAN Adminstrator
