-- [ From: Bob Martone * EMC.Ver #2.5.3 ] --

This message is in two parts and takes up about 3 and one half printed
pages. It's how I saw the past couple of years and where I stand today.
Your comments would be welcomed.

Bob Martone


Patient Congress - Unity

Let me start out by saying that I have volunteered to serve on the
patient congress. The decision was not an easy one nor is it one that I
will take lightly. Like most of the other participants, I was asked to
join not because I am a friend to NPF, or a cast off from PAN or because
I believe this is the way to achieve unity. Nancy my wife of 32 years
(52/22)  is not able to represent herself today the way she could 15
years ago. With her buy-in, I have chosen to fill that void. I can
assure you there are a lot of things that  would have been much higher
on my list of things to be doing right now if we hadn't been exposed to
this miserable disease. On the other hand I have met some of the most
wonderful, and trustworthy people I have ever known as a result of our
long exposure to PD.  Life is full of opportunities and shame on us if
we don't try to seek them out even under the worst adversity.

Three years ago I learned of the emerging national movement  to find a
cure for PD. I had just recently become active at the local level in
trying to raise research dollars and to provide a stimulus to the
formation of our local support group. I had just accepted a position on
the board of our 1000 member Houston Area Parkinson's Society when I
realized the huge potential of a national movement.  In 1995 I went
alone to the PAN Forum in Washington which was held just two weeks
before Nancy was scheduled to have the first Pallidotomy performed in
the Texas Medical Center.  At that three day meeting I met more Pders,
caregivers and medical professionals working on Parkinson's than I had
met in the previous 19 years of our  "invisibility".  While there were
very few success stories that year there was a bonding that took place
among the participants that drew me closer to the need to find a cure
than ever before.

Joan Samuelson paved the way, provided the inspiration and gave me the
tools to make a difference. I don't want to embarrass her nor do I wish
to offend any of the other national organizations but let there be no
question in anybody's mind , Joan is responsible for the Udall movement
and its ultimate success.  Most if not all of us would still be focused
on our local efforts, not even being aware of what could be accomplished
through Washington, and certainly not having  any idea how to get it
done.

At the 1996 PAN Forum many who attended could smell victory. We had
learned how to address Congress and many of us had a fair amount of
success. On the final night of that forum I was sitting in the War room
writing up the summaries of all my congressional visits, Nancy who had
accompanied me all day, thanks to her pallidotomies) was exhausted
asleep and unable to contribute another ounce of effort. As I sat there
Joan Samuelson and Jim Cordy showed up, both looking about the way Nancy
felt but both still courageously hanging in there. I compared the
intense dialogue that followed to the Thrila in Manila. Two champions
were slugging it out for themselves and the entire Parkinson's
community.  Together and apart they got the Udall bill passed.  Words
can not express the thanks  we owe to each of them.

But we are now talking 1998 and what comes next.  Many things have
changed. While we all wanted and eventually received solid bi-partisan
support for the bill, the effort started with a democratic majority in
congress. During the last two years the republican majority controlled
the agenda. Senator Hatfield our Republican supporter retired. There was
strong sentiment among the republicans for the pro-life majority  agenda
. This agenda did not support the use of fetal tissue in research. and
they had decided to use the Parkinson initiative as the place where the
line should be drawn.

To the rescue came Bob Dolezal from Arizona. A PAN activist from an APDA
chapter who had a solid working relationship with Joan Samuelson and PAN
. Bob believed there was a chance to get a republican from democrat Mo
Udall's home state to carry the Olympic (now NPF)  torch that Mohammed
had ignited. As Bob's chances of success became more and more visible to
those of us who were now activists, the NPF stepped up to the plate and
developed an important relationship with Senator John Mc Cain from
Arizona. Ali accepted an invitation to testify before a house Labor HHS
hearing and Senator Mc Cain introduced him. Joan Samuelson also
testified at this hearing. Most of this occurred without much
cooperation between the National groups but as you can see they all had
a hand in a piece of it. What made it work was several individual
efforts put forth by some great hard working people. John Mc Cain had a
huge hand in getting the job done. This  in no way should detract from
Senator Wellstone and Representatives Upton and Waxman but Mac Cain I
believe broke the log jam for us.

Continued in part II.