My name is Jim Cordy. I live in Pittsburgh. IAEm 47. IAEve had
ParkinsonAEs 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 ParkinsonAEs Research and education act.
This bill would increase Federal funding for ParkinsonAEs 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 ParkinsonAEs
Research is disproportionately low. Research dollars per person
afflicted with ParkinsonAEs is $30 as compared to:
AlzheimerAEs ($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 ParkinsonAEs of $6
BILLION. It seems to that ParkinsonAEs for whatever is losing the
public/legislative awareness battle.
I been a subscriber to this list for a number of months and havenAEt
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 wasnAEt we need it now.
Per recent discussions with Paul Smedberg of the APDA in Washington
and Joan Samuelson of the ParkinsonAEs 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.. LetAEs 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
ParkinsonAEs list. Attached is a sample form letter provided by the
ParkinsonAEs 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
