---------- Forwarded message ----------
Date: Wed, 22 Mar 1995 13:50:24 -0500
From: [log in to unmask]
To: [log in to unmask]
Subject: Re: Your subscription to list...
Hello List Members:
We have changed the screen name of Parkinson's Action Network from PANJOAN to
PARKACTNET.
Here is a little 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.
If anyone wants to be on our mailing list, or need information or sample
letters etc. please let me know.
Thank you.
Sheila Heath
PAN Adminstrator
