Thank you Dale.  Your letter to the president got me off my duff.  Perhaps
our two letters may motivate others.

----------
 January 7, 1996
 Office of the White House
 Washington, DC.

 Dear  President Clinton:

I am writing you to ask that you take a leadership position in the battle
to cure Parkinson's Disease.  Last year a grass roots effort resulted in a
bill increasing federal spending for Parkinson's Disease research amassed
62 cosponsors in the Senate and 240 cosponsors in the House.  The language
of this bill was amended to the NIH Revitalization Bill and passed by
unanimous consent in the Senate.  Despite having a majority of cosponsors
in the House, this bill never made it out of the Commerce Committee.

This year we are back.  It is not enough for us who suffer from this
dreadful disease to be told what they great job we did in raising
awareness.    It is not enough to have my Senators and Congressman be
cosponsors.  It is not enough to hear Zach Hall, director of NINDS, say
they are doing what they can.  We want a cure for Parkinson's Disease now.
The most frustrating part of this situation is that the majority of
neuroscientists believe we are on the threshold of making a dramatic
breakthrough if not a cure.  With a strong commitment from your office we
could look forward to one day soon witnessing a Mohammed Ali absent the
trembling hand the world saw as he lit the Olympic flame in Atlanta.

This is a disease where the scientist say we have a real shot at victory.
That translates not only into a reduction in suffering for those afflicted
but also a real reduction in the budget deficit.  It is estimated that
conservatively Parkinson's Disease costs society $6 billion per year.  It
is that potential savings that has resulted in even the most fiscal
conservatives such as Pennsylvania's Senator Santorum supporting this
initiative.

We who have Parkinson's Disease were delighted when Dr. Freed was able to
speak briefly to you during a campaign appearance in Colorado, and that you
chose to mention subsequently, in several instances, the potential for
dramatic breakthroughs  in Parkinson's Disease.  I know this disease
touches you personally.  Your Attorney General courageously announced that
she has Parkinson's Disease.  Retired Senator Pell suffered from
Parkinson's Disease.    The fathers of Senators Wellstone, Robb, and Coats
all had Parkinson's Disease.  Congressman Joe McDade from Scranton
Pennsylvania has Parkinson's Disease.  Your new Secretary of Defense was
last years recipient of the Mo Udall Award recognizing his support of this
legislation.

There seem to be two obstacles hindering passage of this legislation and
neither of them stand up to an open minded evaluation:

Concerns by the right to life supporters about fetal tissue research.  Our
response is simply one does not choose to have an abortion in order to
provide fetal tissue for research.   A simple analogy puts this issue in
the proper perspective.  Pennsylvania's former governor Casey had a heart
transplants.  The heart came from a murder victim.  No one is claiming that
heart transplants increased the murder rate.

Concerns about earmarking.   I believe that the NIH's policy of pursuing
the "best science" is indeed the proper policy to follow in general.  But
as a politician I'm sure you appreciate there are up always legitimate
exceptions to even the best policies.  Such is the case with Parkinson's
Disease.  As we are close in a number of different technological areas in
Parkinson's Disease Research, it's makes sense from a humanitarian point, a
scientific point and an economic point, to two additional resources to
achieve that end.


I am one of an estimated 1.5 million Americans diagnosed with Parkinson's
Disease.  As the symptoms to this sinister affliction to not become
apparent until over 70% of the necessary brain cells have died, it is
estimated that another 1.5 million Americans have Parkinson's Disease but
have not yet been diagnosed.   I am 49 years old and have had Parkinson's
for nine years.  I had to go on disability 3 years ago from my position as
Metallurgical Manager for Allegheny Ludlum.   I have been extremely active
in promoting this legislation.  My wife and I have spoken personally to
both Pennsylvania Senators and the majority of the Congressman.  I am
convinced that if we allocate a modest increase in funding Parkinson's
Disease research that we will realize a breakthrough.  But, there is a part
of me that is terrified at the prospect of continually degeneration of my
bodies ability to function.  Please help!