Prior to Christmas there were a number  of messages re the Udall Bill.
I have worked particularily hard to line up support for this legislation
and
I have a few thoughts and comments
 
Is it perfect ?  Not likely.
 
Has it served to raise awareness to the plight of the Parkinson's Disease
community ?  Most definitely!
 
Has it pointed out the inequitable funding that has developed ?
Most definitely!
 
Would we be better off with the Udall Bill as written vs no bill at all?
Most definitely!
 
If it has not made us, as Joan Samuelson likes to say, "Invisible No More."
Its been a good start.
 
Can this we change portions of this bill?  Possibly, thats part  of
the legislative process.
 
Can argue among ourselves and get nothing passed?  Yes, if we are not
prudent in our criticism.
 
This bill has been referred to committee and has languished there in
both the House and Senate.  If we demonstrate that there is sufficient
interest, that we are not going to go away, there will be committee
hearings.
One of the purposes of the hearings is to listen to ideas as to how this
bill might be improved and/or made more palatable to those who do not
support it in its present form.  I support constructive
suggestions, but only when it is accompanied by the
insistence that we must have increased funding for
Parkinson's Disease research, and only when such criticism is
made in such a manner as to not to erode support for this
initiative.
 
Let us not start squabbling amongst ourselves and thereby
diffuse our effectiveness.  Let us instead continue to insist
that our legislators support this bill and there by get
committee hearings.  If there are ways to improve the bill
they should be investigated, but the first  priority is to
aggressively push to get the bill we now have moving.  I had
hoped that we would have had a Committee hearing on the
Senate side and passed this bill in the Senate this year, but
the budget debacle has Washington thinking of nothing else.
For us with Parkinson's Disease the clock is ticking.  Would
that those who have led us to this gridlock have the sense of
urgency that has been forced upon us.  We must show them
this urgency.  We must show them the anguish we feel
knowing that scientists believe we are close to new
break throughs if not a cure with Parkinson's Disease yet
they squabble.
 
We must insist on a Parkinson's Disease research bill.  As Dr.
Tosk points out, there are problems with the bureaucracies
which administer research funding.  Many scientific break
through are made by those outside the mainstream of current
thinking. If he or anyone knew how to identify those off
beat gems which have repeatedly revolutionized our world,
they could rid the world of the likes of Parkinson's Disease
As no one to date has demonstrated such clairvoyance,  we
must work to keep fostering innovation.
 
One of the ways to do that is to attract the best and the
brightest to do Parkinson's Disease research.  I do volunteer
work at the University Of Pittsburgh and work with a number
of bright young graduate students.  Passing this bill sends a
clear message to them that they made a good choice in
deciding to do research into Parkinson's Disease as a career.
 
I am not critical of those who feel that the Udall Bill can be
improved.   I am for any approach that speeds a cure.  But
let us not wavier in pushing forward the vehicle we   have.
Lets make 1996 THE YEAR WE PASS THE UDALL BILL.
If it is the year we improve the Udall Bill too, GREAT
 
I Titled this message priorities.  I hope those such as Dr. Tosk,
who have taken the time to offer some constructive   comments,
have also taken significantly more time to first contact
their Senators and Congressmen.  That should be the FIRST priority.
We need everyone we can muster in the trenches working hard to
present our compelling case to a Congress determined to curb overall
spending.  I've personally found that having a
researcher join me in visiting   legislators is tremendously
effective, in that they can point to the many areas of exciting
research going on right now and testify authoritively how far
along the learning curve we've come.  If you are doing all you can to
promote the Udall Bill AND make it better, those of us who
have Parkinson's Disease owe you our sincerest thanks.
 
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