My name is Jim Cordy. I live in Pittsburgh. Im 47. Ive had Parkinsons
for 7 years and recently had to quit working because of PD related
problems. I also have recently become very active in starting a Local
chapter of the APDA in Pittsburgh where I live.
During this work I discovered that there was a major piece of legislation
introduced in the US by Senator Hatfield last summer titled the Morris K.
Udall Parkinsons Research and education act. This bill would increase
Federal funding for Parkinsons research from :
the current $30 million
to $75 million the first year,
$100 million the 2nd year and
$200 million the third year.
In reading the background info its apparent that many in the neurological
community think that we are close to another major breakthrough in PD.
Increased funding might speed the progress toward that goal. However, the
expenditure for Parkinsons Research is disproportionately low. Research
dollars per person afflicted with Parkinsons is $30 as compared to:
Alzheimers ($54),
Heart disease ($93),
MS($158),
Cancer($295) and
AIDS/HIV ($1069).
Compare this $30 per person afflicted to the estimated net cost to society
as a result of Parkinsons of $6 BILLION. It seems to that Parkinsons for
whatever is losing the public/legislative awareness battle.
I been a subscriber to this list for a number of months and havent heard
anything about this bill or the effort to get this bill enacted. Perhaps
there was activity last summer before my involvement. If so we need it
again, if there wasnt we need it now. Per recent discussions with Paul
Smedberg of the APDA in Washington and Joan Samuelson of the Parkinsons
Action Network, this bill is going to be reintroduced by its original
sponsor Mark Hatfield (R-OR).
This electronic bulletin board is a great for answering questions and
providing information.. Lets use the power of this network to contribute
to the lobbying effort to persuade the US Congress to allocate the moneys
so that someday we may not need to have a Parkinsons list. Attached is a
sample form letter provided by the Parkinsons Action Network. Please write
your elected officials and encourage them to support this legislation.
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 in January 1995.
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)
Jim Cordy james.cordy@ mail.industry.net
