Washington in Review
The Advocate, the Butterfly, the Fox and the Kiss

It is with very mixed emotions that I right this year's
Washington story. Parkinson's disease sure can bring out the
best and the worst in all of us. One moment you can be
hugging your loved one for hanging in there and fighting day
in and day out against the cruelties of this disease. Then a
minute later you can be screaming at your loved one for
trying to do something difficult that could result in
serious injury. As we traveled the capital with the largest
group of advocates ever, this mix of joy, love, sadness, and
fear combined with a chest pounding proudness was there
minute to minute.

The Advocate

The movement and its success are certainly a site to behold.
Watching more than 180 advocates, in so many stages of
dealing with the disease move into the halls of congress is
a stimulant that each PD family should experience.  Training
was provided to each person to deliver a message loaded with
PD research success stories while plugging for funds in
support of three different programs and providing the
strength to share our painful stories.

The three programs:
1. Focused PD research over the next five years at the NIH
with the new money totaling just under one billion dollars
of projects
2. Support for $20 million  of environmental research into
Gulf War syndrome as many of the veterans are showing
Parkinson like symptoms
3. Support for doubling the investment in The National
Institutes of Health over the next several years so that the
promise of the Human Genome project can be fulfilled

Lt. Colonel Friedl reviewed the issues and the work in
progress to sort out gulf War Syndrome. Dr. Isacson, Harvard
Medical School, Dr. Kim Heidenreich University of Colorado,
Dr. Jeffery Bloomquist Virginia Polytech Institute, Dr. Curt
Freed University of Colorado and Dr. Greg Gerhardt
University of Kentucky, and Dr. Jeff Cordower Rush
Presbyterian hospital  reviewed project successes in several
area's together with the issues remaining to implement new
curative treatments.

Neurotropic Growth factors, Stem cells and fetal tissue
transplants headed the list of curative treatments. Deep
Brain stimulators, virus delivery systems and much more was
presented.

The summary was simple, deliver the money and we will
deliver the cure. PD is believed to be the easiest of the
neurological disorders to solve. Solve it and many other
cures will likely follow.

Activists told their personal stories and the impact on
themselves and their families. This part is always
interspersed with tears of suffering but now the tears were
often being dried by the hope of a cure being expressed by
everyone present.

The Butterfly

Sadly, one of the younger advocates from Arizona who last
year made a tremendous impact on the group took her life at
the age of 34. She had been battling PD for several years
and last year told everyone that she would be with us until
the cure was found. Nancy and I had spent considerable time
with her last year because of our experience with early
onset Pd and our twenty-five year experience with it.

During that forum Nancy and Paige had discussed the
significance of a butterfly in their faith and had actually
exchanged butterfly garments over the past year.  This no
doubt was the low point for the advocates but somehow our
determination to find the cure was enhanced by this sad and
devastating news.  Paige we love you and will miss you.

The Fox

The forum had a very new and inspiring dimension with the
addition of Michael J. Fox. The Parkinson's Action Network
is now merged into and called the Michael J. Fox Foundation
for Parkinson's Research. Michael made several appearances
during the forum including an extra-ordinary personal
expression and an exhausting visit to every single table for
discussion and handshakes and picture taking. This is an
asset that has not gone unnoticed in Washington. The health
aides that I visited had already visited the Fox web site
and one said he learned more about PD in the past 6 weeks th
an they had during his entire career in Washington. What and
impact!!!

The Kiss

On a happy note for the Martone family, Nancy with daughter
Laura, daughter-in-law Leslie and me sitting by her side
received a kiss on the cheek from Michael together with an
award for showing the strength to continue to fight on after
three brain surgeries and back surgery because of PD.  Nancy
is still floating like the butterfly that she and Paige had
hoped to emulate.  For my part well a kiss from the Fox and
another from the Champ when he (Ali) came to Houston leaves
me somewhere on Nancy's short list, I hope. Three other
advocates, Ken Aidekman NJ, Lupe' McCann NY, and Margie
Hansell CA, were also honored.



Bob Martone
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http://www.samlink.com/~bmartone