Testimony - James Cordy

Senate Appropriations Committee

September 28, 1999


Mr. Chairman and members of the committee. My name is Jim Cordy. I've had
Parkinson's disease for 12 years. Formerly I was an engineer in R&D at a
specialty steel company. Parkinson's forced me onto disability 4 years
ago.
I am president of the Greater Pittsburgh chapter of National Parkinson
Foundation,  on their national board of directors, and leader of the
Parkinson Alliance. I am also part of that magnificent grassroots effort
which saw enacted into law the Morris K. Udall Parkinson's Research and
Education Act. I'm here today to give testimony in support of the
dramatic
increase in Parkinson's Disease research envisioned by the Udall bill.

I brought this hourglass to serve several functions:  Hopefully, it will
help me stay within my allotted time, but most importantly, it is
intended
to convey to you that we who have Parkinson's are in a race against time.
Just as the top chamber is depleted relentlessly grain after grain, so is
my
top chamber, my brain, losing nerve cells which control movement day by
day.

I'm here today to help give Parkinson's a human face. Parkinson's disease
is
a degenerative disease of the brain. When my medications are working I
approach some form of normalcy. Perhaps as I walk away from this table
some
may think "he doesn't look so bad to me". But those medications without
which I would be unable to function lose their effectiveness with time.
The
beginnings of that loss are just happening to me. I'm falling behind in
my
race against time.  As a result my hands and legs sometimes shake and my
body is stiff. I have witnessed this disease slowly but surely erode my
physical abilities. I can no longer tie my tie, wash my hair or tuck my
shirt in. I can't shuffle papers or drive my car. I have lost my facial
expression, sense of smell and I now have a monotone voice. But I
wouldn't
be here today if that was the extent of my problems. Unfortunately those
are
just previews of the horrors to come if we don't cure this sinister
disease.
What terrifies me and all who have Parkinson's disease is the real
possibility that I might end up as the recently deceased Mo Udall
bedridden
unable to move or talk.

 I sometimes think I do not serve the Parkinson's research cause well
when I
come to Washington.

The image I want to leave you with is the horror of Parkinson's disease.
A
woman from California wrote to me describing the final ordeal her mother
suffered.  The body of this  former Olympic athlete had shriveled to 60
lbs
and she had assumed a fetal position for her final three years.  Three
years.  This is the image of Parkinsons I want to leave you with this and
the promise of hope.


I've heard the saying that God helps those who help themselves.  (PAUSE)
We
have certainly tried to do that.  We successfully encouraged Congress to
pass the Udall bill.  We supported last year's record increase in NIH
appropriations.  But we didn't stop there.  In an effort to make sure
there
is a continual pool of high quality Parkinson's research proposals a
group
of people, many with Parkinson's disease, the Parkinson Alliance, began
promoting the seed money concept.  This is a program is intended to
encourage new approaches in Parkinson's disease research. Relatively
small
grants from the private sector are made to new researchers or researchers
previously not working in the Parkinson's field.  These small grants are
intended to underwrite the cost of developing pilot data for the purpose
of
submitting an application to NIH for a much larger research grant.
Congress
and NIH will have to be ready to fund the additional applications that
soon
will sprout from the seeds.

We are going to cure Parkinson's disease. The certainty with which I make
that statement  is based on the opinion of a majority of neuroscientists
that Parkinson's is curable in the near term.  The question is when?
I've
been coming to Washington for 4 years. Conditions have changed
dramatically.
Back then there was massive budget cutting and huge deficits. Now we have
surpluses. Four years ago relatively few knew what Parkinson's was.  Now
in
part because of our efforts, but more because of well known people such
as
Muhammad Ali and Michael J. Fox , the awareness has increased
dramatically..
We have widespread bipartisan support, we have done everything that we
can
think of to do.  All of which should promote a more positive climate for
Parkinson disease research.

The reasons for passage of the Udall bill were compelling  but we have
not
realized to date the resolve necessary to get the job done. It was
suggested
that we have a Neurodegenerative Disease Initiative with Parkinson's
leading
the way.   This could result in a possible domino effect that would rid
the
world of not only Parkinson's but ALS, Huntingtons and Alzheimers.  To do
this the first piece must fall.   We need the commitment and sense of
urgency necessary to  realize the potential of the Udall Bill and cure
Parkinson disease years rather than decades.

Senator Specter,  committee members, Dr. Fischbach thank you for your
support.

 JUST  IN CASE you can't find my address.
>
> it is      [log in to unmask]
>
> Nice talking to you.
>
>
> ___________________________________________________________________
> Get the Internet just the way you want it.
> Free software, free e-mail, and free Internet access for a month!
> Try Juno Web: http://dl.www.juno.com/dynoget/tagj.
>

--------- End forwarded message ----------